I need some advice, badly.
I have been having symptoms that mirror MS (Multiple Sclerosis) for months now. I've had many tests to rule out many things, but they did find a "focus" on a brain MRI. They believe it to most likely be a vascular malformation. As of this weekend, I've been having many neurological symptoms including EXTREME spasticity (tightening of muscles and strong involuntary muscle actions) and muscle weakness, and incontinence. It's been so bad, that I haven't been able to walk since Monday.
I've been to a doctor and she referred me to a neurologist at LSU. This was something that was suppose to have been done by the last person I was seeing, but wasn't. She prescribed me something for the spasticity. There was nothing she could do about anything else, and she "You can always go to the ER, they have to see you".
Now, common sense would say "You haven't been walking all week and you're 31 years old. That's an emergency!!!". However that is not so easy in a transsexuals life. If I go to the ER, first of all I'm incontinent and unable to walk, so am I going to need to be changed by somebody there? Second of all, one of my issues is incontinence. Do I really want to get a huge urinalysis where people are looking at me naked?
The fact of the matter is I think I would rather die than go through that. I am 100% serious about that.
I'm not only transsexual, but I have to have this too?! Come the **** on!
The ->-bleeped-<-ty part is I feel sharp pains in my head. For all I know I may die on this bed.
call 911
Regarding the rest, you will remain long after the humiliation you imagine is forgotten... get well!! There are a lot of loving and open people in medicine, you need to just trust the universe will take care to put them in your path.
Please call
I'm sorry to say this , but really I think you need to call an ambulance pronto.
Get to a hospital. The symptoms sound more like a stroke than MS. If it is a stroke and it is treated promptly then you will recover from it well.
Please get help.
I've never had any evidence of a stroke (according to an MRI), my heart is in excellent shape (saw a cardiologist a few weeks ago). My point is the dysphoria with being a pre op mtf may kill me.
I wish there was anything I could say to help... Im sorry, you HAVE to go to the ER. Please get help, I beg you... Im sorry this is hard, I cant even imagine. You have to be stronger than the dysphoria, and I KNOW you are, you HAVE been in the past. Go, now!
Quote from: Alainaluvsu on July 16, 2014, 04:56:09 PM
I've never had any evidence of a stroke (according to an MRI), my heart is in excellent shape (saw a cardiologist a few weeks ago). My point is the dysphoria with being a pre op mtf may kill me.
these are medical professionals they don't give a crap what you look like they just want to help you
Alaina, please get help. What are the probabilities it will go away by itself? It sounds like it is getting worse and you may only have a window where damage can be reversed.
I understand the dysphoria and embarrassment will be huge but what would happen if you go much later, endure the same dysphoria and are impaired due to the delay.
Hugs, I hope you seek help.
Quote from: Alainaluvsu on July 16, 2014, 04:56:09 PM
My point is the dysphoria with being a pre op mtf may kill me.
And that would be a total waste.
I came back here because of Nero. Please do not join him.
Get to the hospital. Please.
Stress from us being GD has made other troubles with your health flare up.
My eldest son does not have GD but he has MS. When he wares his self down both physically and mentally is when he get his flare ups.
They put him in the hospital for weeks. I feel so helpless but he has to take the time out to get his health back to help keep the MS symptoms at bay.
Get help ASAP being some symptoms can become serious fast.
Isabell
If there is one thing life has taught me, there is no such thing as "fair" in this world. Life will kick you when you're down, punish the innocent, reward the guilty, and cause needless suffering without any remorse. Please, don't let yourself become a victim of life's cruelty just for the sake of saving your pride. If you are really in a situation where you think you might die, you need to do whatever it takes to get yourself out of it, now! The boundary between life and death is an extremely fragile thing, and most people don't realize just how fragile it is until it's already too late...
My opinion is that when you are facing serious health issues you need to be more concerned with staying alive and to heck with what anyone else thinks. Get thee to an ER stat!
For all the things that you love to do in your life, for all that brings you joy and happiness, you absolutely must take care of yourself. Until you find out what is going on and begin the process of making a full recovery, nothing in this life matters more than seeking out medical experts who are there to help you recover and maintain your health. They are there to help... let them do that.
I want to say this isn't about pride. It's about the disgust of my life. I hate... HATE being transsexual. I'd be a cis gender whatever any day of the week. Idk what sex. The disgust and anger with what kind of cards I've been dealt can't be explained.
Let me vent a little more.
Let's say this is MS (which I think it is, regardless of the MRI). MS costs up to $70,000 a year to treat. I have enough trouble getting a job as a disabled transsexual. Add on to that my mom is retiring soon and I am her only child. She's counting on me to help her with retirement. How in the **** am I suppose to do that? There's no way I could work right now. I'm falling asleep every couple hours.
I hope it is a blood vessel that busts. This is a terrible life. I'm seriously ready to go.
I totally understand this shame. It's how I felt for many years. I had been avoiding hospitals except for cosmetic surgeries, where I knew exactly who I was dealing with. Get your mum, or a close friend, who can speak on your behalf, to accompany you to hospital so that they can explain your situation to the right professionals and make sure they stay with you.
Alaina, please consider going to the hospital. I promise you that I share that very same fear, of being seen pre-op, but for the most part medical professionals are compassionate and discreet if there is a sensitive situation like this. I realize it will be embarrassing and uncomfortable for you, but your life is worth that temporary discomfort.
Like other have said, you need help ASAP. Medical professionals could care less other than trying to help you and chances are fairly high that you ain't gonna be the first pre op transexual that they have seen.
I know medical professionals couldn't care less. It's not about them not caring. I just do not want to be seen by anybody. I can't even bring myself to be naked around men that are in to me. The hospital I'd go to have seen many transsexuals and they're pretty whatever about the topic. It's not about what they think, it's personal discomfort and disgust with myself that it'll bring. I'm not embarrassed about it as much as I just hate my body THAT much.
You are your mother's only daughter and I bet she's a proud mum. I know I would be. From what you've written in the past, it sounds like she really cares for you. Does she know of your current condition? Do you think she should know?
Quote from: Alainaluvsu on July 16, 2014, 05:24:17 PM
Add on to that my mom is retiring soon and I am her only child.
I'm bypassing the words of advice everyone else has shared here (and support), but if you're unwilling to go to the ER for yourself, go because of this.
It would be a tragedy for a mother to lose her only child for any reason.I don't think we've actually spoken in the forums before, but your transition and advice really helped me when I needed it. And from what I remember reading (semi-stalking) your posts, you two are very close. Transgendered or not, this is a relationship so few of us get to have. Please, if for no other reason, get yourself to an ER.
Quote from: Alainaluvsu on July 16, 2014, 05:24:17 PM
Let's say this is MS (which I think it is, regardless of the MRI). MS costs up to $70,000 a year to treat. I have enough trouble getting a job as a disabled transsexual. Add on to that my mom is retiring soon and I am her only child. She's counting on me to help her with retirement. How in the **** am I suppose to do that? There's no way I could work right now. I'm falling asleep every couple hours.
But you don't know it's MS, and what if it's not? You could be avoiding treatment for something that is completely curable! If you're worried about the cost of treatment, you should have no trouble getting into some sort of government medical assistance program. I am currently enrolled in Minnesota's Medical Assistance program due to my complete lack of income, and all my health care expenses are paid for nearly 100%. Things have changed a lot since the Affordable Care Act was passed.
Quote from: Alainaluvsu on July 16, 2014, 05:48:42 PM
I know medical professionals couldn't care less. It's not about them not caring. I just do not want to be seen by anybody. I can't even bring myself to be naked around men that are in to me. The hospital I'd go to have seen many transsexuals and they're pretty whatever about the topic. It's not about what they think, it's personal discomfort and disgust with myself that it'll bring. I'm not embarrassed about it as much as I just hate my body THAT much.
...I don't know what to tell you then. If your dysphoria is so bad you would rather die than have someone see you naked, it just sounds to me like you're being completely irrational and selfish. People have to do horrible humiliating things all the time to survive. But they do them, because there are things in life that they value enough to make even the worst of humiliations seem irrelevant by comparison. If you just want to die then fine, but don't try to tell me it's just because you can't deal with a few people seeing you naked, because I'm not nearly stupid enough to believe that's really all there is to it.
My mother and I are very close. TBH I've always thought that if she and my cat weren't alive, I'd have no reason to live and would probably not still be here.
She knows as much as I do, but I haven't told her about this latest episode. I know it's selfish, but when I'm gone, why would it bother me? Chances are I'll probably go tomorrow because I'll be sick of suffering. But this just sucks. I've cried myself to the point of not caring anymore. This can't happen to me.
Yes, money is another object. I live in Louisiana. This state couldn't care less about anybody that lives in it. Also, so what if I'm selfish? What good can I do anymore, anyways?
Quote from: Alainaluvsu on July 16, 2014, 06:25:19 PM
My mother and I are very close. TBH I've always thought that if she and my cat weren't alive, I'd have no reason to live and would probably not still be here.
I'm pretty sure the only reason I never killed myself (or at least tried), is because of my brother. We've always been really close, and without each other's support, I don't think either one of us would have survived as long as we have. Sometimes all it really takes to make life worth living is to have one other person who really needs you. What's wrong with that?
Quote from: Alainaluvsu on July 16, 2014, 06:25:19 PMShe knows as much as I do, but I haven't told her about this latest episode. I know it's selfish, but when I'm gone, why would it bother me? Chances are I'll probably go tomorrow because I'll be sick of suffering. But this just sucks. I've cried myself to the point of not caring anymore. This can't happen to me.
I'm sure it wouldn't bother you when you're gone. Dying is always the easy answer. The reason you choose to live isn't because it's easy, it's because there are things in life that can make the more difficult path the one worth traveling. You just need to stay focused what those things are for you.
Quote from: Alainaluvsu on July 16, 2014, 06:25:19 PM
Yes, money is another object. I live in Louisiana. This state couldn't care less about anybody that lives in it. Also, so what if I'm selfish? What good can I do anymore, anyways?
That depends entirely on you. But I can at least promise you it will be more good than you can do by just giving up and dying.
Edit: Oh, and look at this site (http://www.benefits.gov/benefits/benefit-details/1270). It was the first result on the Google Search page for "Louisiana medical assistance".
Quote from: Miyuki on July 16, 2014, 06:38:06 PM
I'm pretty sure the only reason I never killed myself (or at least tried), is because of my brother. We've always been really close, and without each other's support, I don't think either one of us would have survived as long as we have. Sometimes all it really takes to make life worth living is to have one other person who really needs you. What's wrong with that?
When I can't do anything for them anyways?
Quote from: Miyuki on July 16, 2014, 06:38:06 PM
I'm sure it wouldn't bother you when you're gone. Dying is always the easy answer. The reason you choose to live isn't because it's easy, it's because there are things in life that can make the more difficult path the one worth traveling. You just need to stay focused what those things are for you.
I'm so done with this life. I don't think there's anything else I can learn from it. If I'm wrong, so what?
Quote from: Miyuki on July 16, 2014, 06:38:06 PM
That depends entirely on you. But I can at least promise you it will be more good than you can do by just giving up and dying.
I wish I could believe you.
Hey Alaina, we talked about this, wow. Things moved fast. I think the ER is your best bet, you'll get triaged and sent for appropriate work ups. Let them know you "haven't received your Obama Care credentials in the mail yet" to see if that takes care of things in the meantime.
As for the dysphoria in front of health care providers, these are doctors of the human body and condition, and have seen it all. Please force your dysphoria aside and get your health back and get assessed now. I'd really like to hang with you someday.
Quote from: Alainaluvsu on July 16, 2014, 06:44:50 PM
When I can't do anything for them anyways?
I'm so done with this life. I don't think there's anything else I can learn from it. If I'm wrong, so what?
I wish I could believe you.
What can you do? You can do exactly as much with the rest of your life as anyone else could with the amount of time you have left (however long that is). If that's not enough, then here, this is what I plan on doing if I end up in a situation where I know I will be dying soon: http://www.alcor.org/
But how about taking things one step at a time, okay? Right now what you need to do, is look at this page (http://www.benefits.gov/benefits/benefit-details/1270), and get yourself examined by a neurologist as soon as you possibly can. You can decide what is and isn't worth living for when you actually know what it is you're up against.
I have but one question for you...
Who will care for Mom? With you gone, who will watch over her? Who will be there for her if you aren't. How will she go on if she loses you? Do you know how angry and hurt she will be if she learns you "just didn't want to..." anymore?
Ok.. That's like.. 2, maybe 2 1/2 questions.. but if you love her, you have to be there for her. Put yer big panties on and take care of yourself so you can be there for her.
Alainaluvsu, this is the first I've found out about your situation, I read through the entire thread and all I can say is that you know that I care for you a lot as do many others and frankly I want to say that I had you pegged as a can-do type of gal and not a drama queen looking for attention, get your cute little butt to the ER and deal with it. If you just continue this poor me stuff and lay around until it takes you down you shouldn't expect anyone to feel sorry for you. Sorry baby, you're sweet but this is definitely not cool!
A little tough love from Auntie Shan xoxo
Quote from: birkin on July 16, 2014, 05:42:53 PM
Alaina, please consider going to the hospital. I promise you that I share that very same fear, of being seen pre-op, but for the most part medical professionals are compassionate and discreet if there is a sensitive situation like this. I realize it will be embarrassing and uncomfortable for you, but your life is worth that temporary discomfort.
I agree with this. Get to the hospital. On one hand, I can understand how you feel. I'm pre-op myself (and will always be as such). But if I have a serious health issue, I'm not going to let that stop from getting the help that I need. I remember when I went in to have my tonsils taken out (obviously something MUCH less serious) and the nurse asked me when I had my last period. I told her that I was trans, so that didn't apply to me. She walked out of the room and sent in a different nurse. I didn't give a damn. I just wanted what I needed to be done and over with so I could go home.
Quote from: Shantel on July 16, 2014, 07:12:26 PM
Alainaluvsu, this is the first I've found out about your situation, I read through the entire thread and all I can say is that you know that I care for you a lot as do many others and frankly I want to say that I had you pegged as a can-do type of gal and not a drama queen looking for attention, get your cute little butt to the ER and deal with it. If you just continue this poor me stuff and lay around until it takes you down you shouldn't expect anyone to feel sorry for you. Sorry baby, you're sweet but this is definitely not cool!
A little tough love from Auntie Shan xoxo
You know what, you're right. I'm done trying to get emotional help from people. It's obvious that it's impossible to find some coping mechanism for this. Y'all wont hear from me any more about it.
I'm going to come at this from a different angle because i can see why you feel the way you do, and I have many of the same feelings myself. Chances are, what you have is not terminal, but could end up causing further permanent debilitation if left untreated. What then? Things are worse and you are still alive facing people taking care of you, you not being able to help your mom and many more trips to the hospital you don't want to go to now. You may have to be changed for the rest of your life. Few illness or conditions are going to kill you quickly, but many can leave you permanently functioning at a lower level than you were before.
I have no affinity for life, trust me, but the only thing worse that I can think of than my current life, is my current life without full function and loss of independence. I can't imagine you do not feel the same.
Please go get treated
Quote from: Alainaluvsu on July 16, 2014, 07:16:44 PM
You know what, you're right. I'm done trying to get emotional help from people. It's obvious that it's impossible to find some coping mechanism for this. Y'all wont hear from me any more about it.
The only thing we want to hear is that you went to get checked out and they found out what is going on and your getting treated and you'll be fine! Nobody here wants to hear about anything bad happening to you girl!;)
Hun, I cannot IMAGINE what you are going through... it has to be terrifying. Please don't give up this way, though. You really need medical attention asap. I know it's still difficult, but the medical community has seen it all before. It shouldn't shock them or confuse them, and even though I can't understand your issue, I must say you should not be ashamed. There is nothing wrong with being trans. I know you said you are disgusted by yourself, but flesh is flesh, and life is life. It is too important to throw away. Especially when your mind is clouded by so much stress. If you want to pick this battle, save it for another day when you aren't suffering, when you are clearheaded and able to make a rational decision. I think it's obvious that many of us would miss your smiling face if it were to leave, so please, reconsider making a trip to the hospital today.
Quote from: Alainaluvsu on July 16, 2014, 06:44:50 PM
When I can't do anything for them anyways?
Sometimes, it's not what we think we can't do that matters. There are many joys we bring to others, and it's not so much the obvious ones that count.
Quote
I'm so done with this life. I don't think there's anything else I can learn from it. If I'm wrong, so what?
The longer I live, the less I seem to know. I reckon by the time
I'm done with it, I will know less about it than I started! And not due to senility. :laugh:
BTW, "people" will not be going to see you naked. They will always strive to keep your decency.
Quote from: Alainaluvsu on July 16, 2014, 07:16:44 PM
You know what, you're right. I'm done trying to get emotional help from people. It's obvious that it's impossible to find some coping mechanism for this. Y'all wont hear from me any more about it.
Alaina I hope your not being facetious. You know emotional well being takes a back seat to a medical emergency. I'm with Shan on this. C'mon girl. Let's do this - admit yourself into the ER now. And take your laptop or tablet to the hospital!
Quote from: Alainaluvsu on July 16, 2014, 06:44:50 PM
I'm so done with this life. I don't think there's anything else I can learn from it. If I'm wrong, so what?
you are so beautiful and I almost teared up when I read you are having such bad health problems. I remember your posts from back in 2012 when I first started taking hormones, it's so sad to see you this way
whatever route you take I hope you feel better...
Quote from: Hideyoshi on July 16, 2014, 07:50:05 PM
you are so beautiful and I almost teared up when I read you are having such bad health problems. I remember your posts from back in 2012 when I first started taking hormones, it's so sad to see you this way
whatever route you take I hope you feel better...
Thank you :(
Alaina, you've always been someone I look up to. Your strength and courage have had a profound impact on my life. I can only hope that you muster a little more and keep being the superhero you are... Even if you're a saints fan... <3
You do have rights under the law, just we seem to never exercise these rights when we need.
USA Patients' Bill of Rights:
The patient has the right to competent, considerate, and respectful
care in a safe setting that fosters the patient's comfort and dignity
and is free from all forms of abuse and harassment, including
abuse or harassment based on gender identity or gender expression.
The patient has the right to privacy and confidentiality
during medical treatment or other rendering of care within the
[Hospital].
Medical students, residents, and other persons not directly
involved in the care or treatment of a transgender or gender-
nonconforming patient should not be present during the patient's
case discussion, consultation, examination, or treatment except for
legitimate training purposes. Before observing or participating in
a transgender or gender-nonconforming patient's case discussion,
consultation, examination, or treatment for training purposes,
trainees should be counseled on the [Hospital's] Gender Identity
and Gender Expression Non-Discrimination Policy and the
Protocols for Interaction with Transgender Patients. In all cases,
discussion, consultation, examination, and treatment must be
conducted discreetly.
Transgender and gender-nonconforming patients have
the right to refuse to be examined, observed, or treated by medical
students, residents, or any other facility staff when the primary
purpose is educational or informational rather than therapeutic,
without jeopardizing the patient's access to medical care, including
psychiatric and psychological care
So go and make them tow the line if not make a complaint to the Director of the hospital.
These are all the rules across the USA on health care anti discrimination laws.
And so many complain about the ACA..
I wish you speed in getting help.
Isabell
Quote from: HeatherR on July 16, 2014, 08:03:26 PM
Alaina, you've always been someone I look up to. Your strength and courage have had a profound impact on my life. I can only hope that you muster a little more and keep being the superhero you are... Even if you're a saints fan... <3
LOL! Well thank you. I hope you're not a Falcon or 9er fan, but if you aren't, I really do appreciate it :) That means a bunch to me.
I'll add 2 things:
1) Discrimination is the last thing on my mind in this situation. I've never had issues in this city with that and LSU Hospital of New Orleans would be the very last place I would fear it happening. I've been in the ER and ICU in this town and never had 1 issue with being transsexual. I just don't want to be stripped down and prodded, it makes me hate myself more.
2) I talked to my mom, and I'm going tomorrow if I still can't walk. I can't go tonight because my roommate had a procedure done today and she can't drive until tomorrow.
I really just want somebody to talk to who can understand where I'm coming from. I don't feel like anybody can help me with how to move forward with this in my life and I'm just very scared of facing this. I cannot face this, it's not something I can beat.
Sweetie, You got this! And I'm from Seattle, so I'll let you guess.;)
Quote from: HeatherR on July 16, 2014, 08:25:18 PM
Sweetie, You got this! And I'm from Seattle, so I'll let you guess.;)
Let us catch y'all in the dome. PLEASE come to the dome just ONCE!!!!! lol
Lol! You'll have to hang in there for that! ;D <3
Quote from: Alainaluvsu on July 16, 2014, 08:22:57 PM
I really just want somebody to talk to who can understand where I'm coming from. I don't feel like anybody can help me with how to move forward with this in my life and I'm just very scared of facing this. I cannot face this, it's not something I can beat.
Sorry... I didn't mean to be so hard on you. All I really want is for you to go and get the care that you need. Even though I don't really know you, and even though it's probably none of my business, too many people die senseless deaths in this world as it is. I know you must be terribly scared of what you're going to hear after the neurologist examines you (God knows I would be). I really hope you're going to get good news (or at least as good as the news can be, under the circumstances), and that this is going to be something you can laugh about later. But if that isn't the case... let's not even worry about that right now. It's easy to assume the worst when scary things start happening to your body for no apparent reason, but until you know what the problem really is, why not just assume the best?
You've been inspirational to me, especially on my first days here when I was lost and figuring myself out. Your posts helped me. I expect I'm not alone in that. Even if I am, you're already making a positive difference. The world would be a lesser place without you.
I used to live in Louisiana, I understand why you don't want to go to the ER. All the same, please DO go. Tonight would be best.
My roommate brought up another fear of mine. What if they cut off my HRT? I'll literally blow my skull out before I go back to that. I am not exaggerating on that at all.
I'm going with Shantel here.
You've been one who just got on with things.
Why stop now? Don't give a stuff about what some idiot in the hospital might think - health care providers have been there, done that, got a crappy t shirt and malpractice lawsuit as well. You're going to be another person in need of care, and that is all that will happen.
Get your arse to hospital. If you kill yourself by not going that's one thing. If it's an infarct (partial stroke) and doesn't kill you but leaves you a crippled vegetable, what do you think is going to happen?
And not knowing what is going on is putting more stress and strain - you are overthinking with not enough information.
Hugs and well wishes,
Luna
Embarrassment is just a mental state of mine. But If you do not want to stay here than your love ones will miss you and would be deeply hurt on the inside. Remember you might get a cure for your health problem , then you would have died for NOTHING for not staying here. A friend of mine had to deal with MS as well also having a cross dresser for a husband who she loved. Remember you HAVE people who love you both your mom and the people here.
I too have failing health: diabetes,DVT,had a heart attack,pain in my legs and feet because of DVT and diabetes,Inoperable kidney stone, and diabetic cirrhosis of liver. I stay here because my friends need me and I don't want to disappoint them by leaving. Some are major others are minor.
Just hang in there and LOVE yourself
Quote from: Alainaluvsu on July 16, 2014, 10:06:07 PM
My roommate brought up another fear of mine. What if they cut off my HRT? I'll literally blow my skull out before I go back to that. I am not exaggerating on that at all.
this is what I dread with my health problems
ulcerative colitis gives a higher risk for DVT, and if they say I need to get off of hormones down the line, I fear how I'd react
I hope there's the best news possible from the doctor given your situation
I doubt I have DVT. No symptoms are present. I just fear they'll try to keep me off of them just because they don't know what else it could be. I've had neurological symptoms from long before I started HRT. 2 GPs and a cardiologist have told me that what I'm experiencing is NOT from HRT. I know that it's not from hormones. But all it takes is one ->-bleeped-<- neurologist....
Quote from: Alainaluvsu on July 17, 2014, 07:51:07 AM
I doubt I have DVT. No symptoms are present. I just fear they'll try to keep me off of them just because they don't know what else it could be. I've had neurological symptoms from long before I started HRT. 2 GPs and a cardiologist have told me that what I'm experiencing is NOT from HRT. I know that it's not from hormones. But all it takes is one ->-bleeped-<- neurologist....
totally understand the fear of losing HRT. I'd be on the roof of my apartment if there was no way I could get hormones. the thing is you have to be alive to enjoy the beauty of womanhood. One day at a time to weigh all your options in worst case scenario . Find out what your dealing with first it just might turn out to be all right.
I'm sorry you are going through this and don't really know how to help. I just wanted to say that I really hope it turns out okay in the end and am sorry you have to go through this.
Is that referral for the neurologist anytime soon? At the very least, seeing the specialist could get you further information about your condition without going into the hospital. However, it's very likely that they would send you to the hospital if you have been immobile as they would likely need to do further testing and would require constant monitoring of your situation.
In any case, I don't intend to push you in any direction. You have to do what's best for you and I hope everything works out for the best.
Quote from: Alainaluvsu on July 17, 2014, 07:51:07 AM
I doubt I have DVT. No symptoms are present. I just fear they'll try to keep me off of them just because they don't know what else it could be. I've had neurological symptoms from long before I started HRT. 2 GPs and a cardiologist have told me that what I'm experiencing is NOT from HRT. I know that it's not from hormones. But all it takes is one ->-bleeped-<- neurologist....
Screw that neurologist. I'd have to be strapped down before they take my HRT from me. I saw a neurologist 2 months ago about dystonic cramping in my right hand. I never brought up being ts or taking hrt. But I can understand that your situation makes it almost impossible to not bring up these facts. So I sympathise.
I have no idea when I'll be seen by a neurologist. I have to wait for LSU to send me an appointment letter in the mail to know when that happens. That is, unless I want to pay out of pocket to see a neurologist sooner, which I don't have the money for.
I'm going to the ER today. I still can't walk. The spasms are down and my roommate says I'm doing better, and I've been able to feel the need to make a BM which is something I haven't been able to feel since Monday, so those are really good signs...
Quote from: Alainaluvsu on July 17, 2014, 08:35:41 AM
I have no idea when I'll be seen by a neurologist. I have to wait for LSU to send me an appointment letter in the mail to know when that happens. That is, unless I want to pay out of pocket to see a neurologist sooner, which I don't have the money for.
I'm going to the ER today. I still can't walk. The spasms are down and my roommate says I'm doing better, and I've been able to feel the need to make a BM which is something I haven't been able to feel since Monday, so those are really good signs...
well, sounds better, as others have mentioned you've been an inspiration to me too.
Quote from: Alainaluvsu on July 17, 2014, 08:35:41 AM....I'm going to the ER today. I still can't walk. The spasms are down and my roommate says I'm doing better, and I've been able to feel the need to make a BM which is something I haven't been able to feel since Monday, so those are really good signs...
Best of luck at the hospital today. May the outcome be the best case scenario for you.
Quote from: Alainaluvsu on July 17, 2014, 08:35:41 AM
I have no idea when I'll be seen by a neurologist. I have to wait for LSU to send me an appointment letter in the mail to know when that happens. That is, unless I want to pay out of pocket to see a neurologist sooner, which I don't have the money for.
I'm going to the ER today. I still can't walk. The spasms are down and my roommate says I'm doing better, and I've been able to feel the need to make a BM which is something I haven't been able to feel since Monday, so those are really good signs...
I wish you the very best of luck at the hospital today. I just ran across your thread, and am so sorry to hear about your going through this. I also understand everyone's concerns. You've been very inspirational to everyone here, very much including myself, and we don't want to lose you.
I hate hospitals -absolutely hate em! Following my 91 accident I had more than my fill of hospitals to last me a lifetime. But, I also know that because I'm in transition, they are a necessary evil I must endure in order to have my surgeries, and their ER should something unexpected crop up interfering with my ability to function. I also very much understand your genital dysphoria, for I too feel the same way. Mine is so bad I keep a dish towel by my toilet to throw over myself when I pee so I don't have to look at the discusting repulsive abnormal thing that shouldn't have been there. So I understand all too well hun believe me. However despite that I also have come way too far, as I know you too have, to give up now just because of some health hiccup trying to interfere with the happiness I've finally found in becoming on the outside who I've always been on the inside.
Feel free to pm me if you need to talk further. We're all here for you, Please know that. :icon_bunch:
Oh and let us know how things turn out. If you can, as someone suggested, take your laptop or tablet with you to the hospital.
Allie :icon_flower:
Any news? Hope you are ok!
I can't take losing yet another friend. First, FA, then Melody. You better not bite the bullet Missy! I'm gonna be driving truck soon. Dont make me come over there!
Seriously, please let us know!;)
Quote from: Alainaluvsu on July 16, 2014, 08:22:57 PM
I really just want somebody to talk to who can understand where I'm coming from. I don't feel like anybody can help me with how to move forward with this in my life and I'm just very scared of facing this. I cannot face this, it's not something I can beat.
I've read some of this, well most all of it and I felt like, I should respond.
I understand the failing health I really do and I understand wanting to give it up I mean the continued fighting just to go another day, the pain, the wondering if it'll get better, will it get worse, the never ending what is, and being told to be optimistic when you rather look at it from the worse case Scenario so your not disappointed if it is the worst outcome.
I feel for the constant stressing, it sucks I'm there right now atm, I go in, in the morning for surgery, the second one in 6 months and one being at work for 3, let me tell a little story, back in 2004 I started having pain, not just any pain pretty serious pain, by the time I was 26 I had became incontinent, the reason at time was I had multiple lying disc's, well I didn't have to money or insurance to fix it, but I trudged on, with help of a few friends and a hobby of fast cars, then my dysphoria kicked into overdrive this was 2012,by this time I had a different job along with insurance and had been seeing Dr's, at this time I made a commitment to get surgery or death, and I decided I'd get srs first, as I was also aware that I needed another surgery(more on that in a sec) I got rid of the toy, I went on a diet as I was about 60lbs to much,
, it seemed my life was on track, well... My Dr's that I had/have (I have 4 at this point, pain, bone, endo, surgeon) started to get into some rather info, or I should say my endo to a interest in multiple red flags that hadn't been see (partially my fault) in December 2012(3 months away from srs) my Dr took bone, blood, and skin samples to send to California to be tested in January 2013 the results came in and have forever changed my life, I have Osteo Genesis Imperfect I congenital and unusable disease, I cried for over an hour in the parking garage, at that moment I felt like the world had ended I didn't know if I could go on, but I picked my self up, and decided to go through with my srs, and yes I got that done, but my troubles weren't over, I was not using arm crutches to move around, I was severely limited in my mobility, I didn't know what was next, I met my bf a few month after srs, he's still with me which as surprised me more than everything, but I was getting worse, now strangely enough my incontinence had gotten better after the surgery but my surgeon did say what he would do might improve that issue, but again I was getting worse I'd fall at home, at work a lot worse, December 2013 I had surgery on my spine, a multi level lamenectomy and discectomy of 4 disc's with no fusion, recovery sucked, it took 3 months, of which 3 weeks in bed, and yes diapers for a short time again :( but finally I was able to return to work, however I had permanent nerve damage, so... I had pain,
However as the time moved it seemed I was doing better, but my job was still on the line as I had permanent restrictions because of the surgery and my disease, but it seemed to be getting better, that is until the 24th of last month, I had 2more disc's burst, not just bulge or herniate but actually burst, it happen while I was working however I suppose I had warnings as I had pretty bad pain on Sunday and strong enough pain I went to the effect, but nevertheless I needed my job so I went in on that Tuesday. I guess that was the last straw cause I believe that was when the burst, I collapsed screaming, and crying on the front floor, they had to carry me off the floor my bf had to come get me and, another er trip, this time they wanted to keep me, but I convinced them I'd be better off in my own bed, even though I couldn't even walk at this point. Shortly after the Dr visit, mri I was told what was wrong, and I didn't do anything risky, I followed the rules and to no direct fault of my own, this happened. So here I am awake at 5am and going in for another surgery at 730am, and I wonder to my self whats next, and feel tired of all this, the pain, the pills, the surgeries the pain management, the being so weak and fragile, so I get it, I have thus unusable disease, along with scoliosis now because of it, my spine according to my Dr is a time bomb, in the mri my disc's from shoulders down are all black and many have some bulging, I have asthma, and anemia as well again a gift from this disease I take 13 medications now, including my weekly shot, along with the pain visits every 6 weeks where there give me 16 epidural Injections to numb the nerves. And I wonder if it's worth going on... I feel like all that I'm doing is suffering and being a disappointment, I'm embarrassed as well because I feel like a failure, it hurts so bad, and I'm so scared I don't know what to do...... God Idk what to do, but I'm hanging on, because I think if I gave up I'd hurt my bf, my mom, my brother, and friends as well as the friends on here, I'm holding on because of their love, because at the moment it the only thing I can hold onto and makes me feel worth something
So Alaina, I get, oh girl do I so get it, but please for love hang in there and fight!, and remember you are not alone, and if you want to talk to me pm me and I'll give you my phone number, and if you can't call I'll call you.
So please don't give up, and know I'm here and I understand.
Let's fight this together, Btw I'm 34 years old.............
Quote from: Rainbow Brite on July 17, 2014, 10:50:40 PM
I can't take losing yet another friend. First, FA, then Melody.
not to derail the thread, but what happened?
Seriously... what a day.
So I still can't walk. I'm at LSU in a room. Let me tell you how I got to this point.
We started to drive here at 11:30 or so. On our way, the drawbridge was up. So we decided to take a detour (my roommate was driving). We got in an undesignated turn lane to turn right, and BAM! A dump truck turned right into us from the lane next to us and takes my bumper off. He is still going until people at the bus stop yell for him to stop. We are okay, but the truck driver jumps out and starts talking about how he had his blinker on (he didn't).
So here we are, two white transsexuals in the most ghetto part of the lower 9th ward waiting for a cop. While we're waiting, a guy I have been talking to offers to come wait with us (I told him to come on). I'm so freaking out at this point. Like I'm ready to go home and end it. I'm thinking: I have no uninsured motorist, no collision, and that wasn't a designated turn lane that we turned in. I'm like, ->-bleeped-<-ed. I'm ->-bleeped-<-ed until there's a broken tail bone ->-bleeped-<-ed.
Well, the cop promptly shows up 2 hours later (NOPD doesn't have the fastest response times in the best parts of town, let alone in the lower 9th). Luckily, I find out that 50' before an intersection, the margin is a turn lane. Oh but there's more. Not only does the guy get cited for an illegal turn, but his trucks registration is expired, he has no medical insurance, AND his CDL is expired!!! Needless to say I'm calling an ambulance cha... I mean a lawyer that I used to do work for and I'll have my bumper fixed for sure.... The cop gives me my info back (including my registration which is under my old name), and asks for (my old name)'s contact number. (Ha!)
So after a brief meltdown and then some relief (to say the least), I'm on my way to the hospital. We check in around 2:30 (yeah, it seriously took 3 hours to get 10 freaking miles thanks to the wreck). Triage takes me back to get my info (I don't have periods. Why? Because I'm transgender) and I sit. And I wait. And I wait. And I wait.... And I ... give blood around 7:30. Then they take me back to the waiting room and I w.... um go back to my room 10 minutes later (the hell?) I go to my room. And I wait. And I wait.... (LSU blows)... and then I get asked my history around 8:45. Then I get asked again. And I wait. Then a doctor asks me my history and try to get me to walk (fail), and does this follow my finger routine (fail).
They try to take a urine sample around 9:30, and I tell them it's not coming. I ask why they want it, and the nurse said to check for pregnancy (facepalm). So I tell her to come closer, and tell her that I'm transsexual. She goes "So you don't have ovaries?", I tell her nope, and she takes everything away. A resident comes back and wants to stick his finger in my butt (to check for "rectal tone"). So I tell him that I'm transgender, and not to be shocked, he said "Well, thanks for telling me, because I would've been surprised, but that's nothing I couldn't handle".
They're kinda scratching their heads at this point, so they send in a couple more doctors to ask me the same questions and test the same functions they have been testing (pushing on my feet, etc). And I wait... and I wait.... and by 11:00 I'm going to get a CT scan. ..... and I wait.... and I wait.... and I wait.... and finally around 1:00 (am) or so the neurologist comes and talks to me. And asks me the same questions and test th.... (eye roll). He goes away, comes back and asks me why I'm taking Aldactone (ffs, seriously??), and I tell him because I'm transgender and he literally says "Hmm... well you did a good job covering that up, that's the second time this week I didn't know..." THIS IS MY FREAKING NEUROLOGIST!!!!!!!
So I wait.... and I wait.... and around 3:00 (am), they come back to tell me that my CT was negative, they weren't "too impressed" with my MRI findings being a venous malformation, that they're very interested in finding out what's going on. They tell me that they're going to transfer me to a room and question me and test my functions every 4 hours. Then, sometime today I'm going to get an MRI on my spine and a SPINAL TAP. Just so you can get this straight, they're going to interrupt my sleep all night and then have me sit in a loud ass machine for like an hour or two, THEN stick a needle in my SPINE that could PARALYZE me if I move or if they twitch.
The nurse that was helping me in the ER was so cool. She had been trying to bend rules for me the entire time (They all let my guy friend stay as a visitor the ENTIRE time, which they shouldn't have done). The hospitals policy is to stick sexes together in rooms. This means that I would be paired with a guy. I told her I'd rather be paired with a girl, and she goes to see what she could do, but she'd have to tell the nurse that would be looking over me what's going on with my gender. Well, that didn't fly, but it did get me a room of my own (even better!!) So I wait, and around 4:00 (am) they go to move me to a room. The big fat nurse is talking to my ER nurse and I hear "That's her??!" and they go silent, and I see a surprised look on fat nurses face.
So here I am, laying in bed in my room. Hours go by, and my friend decides to leave. So I decide to get some sleep. Yeah, right. First of all, I'm more concerned about this ->-bleeped-<-ing massive needle that's going in my back. But more distracting, is this stupid monitor that tends TO BEEP CONTINUOUSLY if I bend my arm a certain way, and I need to get a nurse to shut this stupid ->-bleeped-<-ing thing up. So every time I go to get comfortable to go to sleep, this stupid ->-bleeped-<-ing thing beeps continuously. And the stupid ->-bleeped-<-ing ghetto nurses don't do a good gosh damn thing about it. It takes them minutes to respond to shut it up (as in like 20 minutes). My quality of life dropped dramatically since ->-bleeped-<-ing ghetto nurses took control.
I guess I should look at the bright side though, I got a room looking RIGHT at the Superdome!!!
Kill me. I'm done with my life. Seriously :(
Seriously?
If you can't handle this, just wait till you're flat on your back on the second floor of the GRS recovery ward 'cause it took an hour to get the doctor while you were literally bleeding out through your brand new vagina, and then they asked you to stand and walk downstairs to go to the next door hospital, and you fainted five seconds after standing up.
Or till you discover that the pain of walking is just about an eight, and you have to do it (with stairs) three times a day every day for a week and a half just to eat.
Things happen. Keep positive and endure. Things will get better - believe me they will.
Quote from: Alainaluvsu on July 18, 2014, 07:05:47 AM
Kill me. I'm done with my life. Seriously :(
Stop being selfish.
Nope we will not kill you . We are not done with your life. Seriously :)
You have too much to give and to gain. From the posts I have read from you with the advice contained goes to show that you are far more than the stuff posted within this thread. Use your strength and be patient.
I am talking as someone that has been clinically dead, has been paralysed from the neck down due to a spinal cord injury and spent 7 months in a MENS ward on a rehab unit learning how to do stuff again. The stuff you are experiencing now I deal with on a daily basis and have done for the last 7 years, yet after all the crap that surrounds it I still find soo much wonder in this world and I still continue with my journey.
Stay strong.
Nikki
Quote from: Alainaluvsu on July 18, 2014, 07:05:47 AM
Seriously... what a day.
): sounds awful
Quote from: ZoeM on July 18, 2014, 08:02:29 AM
Seriously?
If you can't handle this, just wait till you're flat on your back on the second floor of the GRS recovery ward 'cause it took an hour to get the doctor while you were literally bleeding out through your brand new vagina, and then they asked you to stand and walk downstairs to go to the next door hospital, and you fainted five seconds after standing up.
Well MOST of it is likely because she doesn't know wtf is wrong with her body. And a potentially debilitating disease (MS) is something far more mentally traumatizing than knowing you'll eventually recover from a vaginoplasty.
Quote from: ZoeM on July 18, 2014, 08:02:29 AM
Seriously?
If you can't handle this, just wait till you're flat on your back on the second floor of the GRS recovery ward 'cause it took an hour to get the doctor while you were literally bleeding out through your brand new vagina, and then they asked you to stand and walk downstairs to go to the next door hospital, and you fainted five seconds after standing up.
Or till you discover that the pain of walking is just about an eight, and you have to do it (with stairs) three times a day every day for a week and a half just to eat.
Things happen. Keep positive and endure. Things will get better - believe me they will.
Try going up and down a steep flight of stairs while you literally CANNOT WALK from what doctors believe at this point to be Multiple Sclerosis. Yes, I straight up said "It sounds like y'all are looking for MS", and they said "You'd be wise to think that, it's what I would believe too". At least I'd get something from SRS. What do I get from MS? A permanent disease that costs 70 grand a year to treat, and a disability check that's about $1,000 a month for the rest of my life. BTW, the pain I get from whatever I have going on is INSANE. I will go from fine to screaming in a split second. Or the shocking jolting pain that I get that causes my entire body to twitch. Really safe while driving. Ever pee on yourself? Yeah, I've done that every day this week. Sexy huh? That should go well with my new vagina one day.
You seriously want to compare this to SRS? MS is permanent, the pain from SRS is not.
The good news is my incontinence is going down and my spasms are calming. Still can't walk though, and I still do get the occasional splitting pain that cannot be touched with any medication whatsoever. And no, I'm not exaggerating. No pain killer or CNS suppressant kills the pain. Nerve pain associated with CNS damage is terrible and very difficult to treat.
Quote from: nikkit72 on July 18, 2014, 08:20:27 AM
Stop being selfish.
Nope we will not kill you . We are not done with your life. Seriously :)
You have too much to give and to gain. From the posts I have read from you with the advice contained goes to show that you are far more than the stuff posted within this thread. Use your strength and be patient.
I am talking as someone that has been clinically dead, has been paralysed from the neck down due to a spinal cord injury and spent 7 months in a MENS ward on a rehab unit learning how to do stuff again. The stuff you are experiencing now I deal with on a daily basis and have done for the last 7 years, yet after all the crap that surrounds it I still find soo much wonder in this world and I still continue with my journey.
Stay strong.
Nikki
I haven't done this yet (and I'm so sorry I haven't), but I really do appreciate everybody saying that I've inspired them and helped them at some point. That has been overwhelming and it means the world to me. I've gotten it here and in PMs, I may not respond to everything but it means the world to me from EVERY one of you. It gives me a new reason to feel like I'm living a worthwhile life :)
This is just a phase I'm sure, and when I'm over it I'll probably be the same old person as before. But this is literally the hardest part in my life and it's not even close. I've gone through a lot of stuff (my dad tried to kidnap me to gain custody so he wouldn't have to pay my mom child support when I was 7) but this beats it with a bat until it's unconscious. I'm very scared of the spinal tap. I'm just as scared of an MS diagnosis. How the hell do you start to tackle the reality of that?
Hang in there sweetie, you're tougher than you think! Meanwhile we'll all be praying for you, sending positive vibes and whatever else people do in hopes of a positively bright outcome through the diagnosis and treatment process. Auntie Shan thinks the world of you and I can plainly see many other of our girlfriends do too. :icon_bunch:
For what it's worth, Alaina, I very much appreciate you for giving the doctors this opportunity to diagnose and treat what's really going on with your body. From my end of the interwebs you being at the hospital yesterday and today feels good and right. You're awesome.
Thank you.
I just wanted to reiterate what Shan and Miharu are saying. I'm glad you made it to the hospital (as unfun as that is) and are getting help. For what it's worth, I think you're awesome too.
:icon_hug:
I just want to say thank you, Alaina for going to the ER and getting checked out. As I said, I hate hospitals and got enough of them in 91/92 from my accident and then again in 2002/3 with more surgery to correct positioning of mesh they put in during my first surgeries in 91, lol! Believe me I wanted to end my suffering too as all these health problems kept further putting off my transition.
Anyway, I'm so glad your getting help. and as for the fat nurse, your skinny so you have the upper hand -remember that, lol! (it's a girl thing I'm sure your aware of).
Listen, take care girl and get better. :icon_bunch: I know spinal taps ain't no fun and they hurt like hell but they're necessary in finding a diagnosis. We're all here for you please know that. Also remember you can pm me anytime if you need to talk. :icon_bunch: :icon_bunch:
Allie :icon_flower:
Thank you all, from the bottom of my heart (yes, that's perfectly healthy!)
I had an EEG done. Goopy hair day now. IDK what they found, but they had to have found something because I only saw the blinking lights on the left side and I was suppose to see them on both sides. The person doing the tests said it could be from blurry vision. I also twitched a lot when the lights went on. We'll see....
2 neurologists came to talk to me as the test was being done, but they left and will come back. I'll keep everybody posted...
Quote from: Alainaluvsu on July 18, 2014, 11:31:14 AM
Thank you all, from the bottom of my heart (yes, that's perfectly healthy!)
I had an EEG done. Goopy hair day now. IDK what they found, but they had to have found something because I only saw the blinking lights on the left side and I was suppose to see them on both sides. The person doing the tests said it could be from blurry vision. I also twitched a lot when the lights went on. We'll see....
2 neurologists came to talk to me as the test was being done, but they left and will come back. I'll keep everybody posted...
I've had an EEG done before. Those things are never fun. But I got lucky with the hair thing since they had some sinks around so you could get that goop washed out of your hair afterwards. I remember when the test was going on, I was feeling the usual weird stuff that was going on at that time. (Weird feelings with my heart, complete numbness in my arms and hands,etc) That whole time was so screwed up.
yes, I totally understand the beeping thing
I know its so easy for us to just say "buck up, put your big girl panties on and get over it" but we understand, really, we do.
You are in our prayers.
Quote from: Paula Christine on July 18, 2014, 12:33:58 PM
I know its so easy for us to just say "buck up, put your big girl panties on and get over it"
It annoys the hell out of me when people tell me that. (Especially if it's some serious health related issue.) I just want to punch them when they do that.
Dear Alaina, hang in there... you're strong; you're improving...
Hell, you're a woman :D
Quote from: Julia-Madrid on July 18, 2014, 12:56:58 PM
Dear Alaina, hang in there... you're strong; you're improving...
Hell, you're a woman :D
I am a woman hear me roar
Please keep us updated Alaina. We are all worried about you and why it was so important to go the the hospital. As for the embarrasing part though I fully understand To stay an active driver even though I don't drive anymore, others do it for me but if someone gets sick and so on I have to take thier place. I have to do physicals every 2years and they have do the old turn your head and caugh bit. I freaked out for a week 'cause I had bikini tan lines on the bottom. But the doctor didn't even act surprised.
I really hope you get well soon and wish luck for you. And yeah, you are more of an inspiration thatn you think.
BTW Hon, if you have to go on disability you should also be eligiable to get medicaid which should cover the mdeical bill if you have MS.
Medicaid in this state is a complete joke. Louisiana is set up to make people suffer. New Orleans is a bit different because they have their own version of Medicaid, but it still really sucks (a metro areas resources can only go so far).
You are getting updates as soon as I get them. I got a walker. That's about the only update I have at the moment. It's raining here in the Big Easy, I may post a beautiful picture of my view later when the Dome is all lit up :)
Well I am glad you went to the hospital Alaina (finally!). Reading some of your posts in this topic really shocked me because in like every other post that I have seen you write you always seem so happy, nice, helpful and seeing that you weren't gonna go and wishing to be dead was quite saddening to me. I was wishing I lived nearby cuz I wanted to throw your ass in my truck and drag you kicking and screaming to the hospital myself...
Anyways, thank you for going; I'm not ready to lose my secret susan's crush :embarrassed: . I hope the doctors find out what is wrong and fix it and send you away with a clean bill of health. You'll be in my thoughts till then.
ps. thanks for the updates as well
I missed the neurologist because I was asleep. No more tests for today, they'll have to wait til tomorrow or Monday. A financial assistance lady helped me apply for Medicaid (state version), and gave me information on what I need for the state to foot this hospital bill. They're going to set me up with a social worker in the hospital. Not sure if they know something I don't know about my test results...
Quote from: Alainaluvsu on July 18, 2014, 06:35:28 PM
I missed the neurologist because I was asleep. No more tests for today, they'll have to wait til tomorrow or Monday. A financial assistance lady helped me apply for Medicaid (state version), and gave me information on what I need for the state to foot this hospital bill. They're going to set me up with a social worker in the hospital. Not sure if they know something I don't know about my test results...
I'm very happy to hear your getting the help you need. Hopefully the medicaid will work out so you can get the treatment you need without having to stress over how to pay for it. At least that is one less thing to worry about. Stress is never good in any situation. Now you can just concentrate on getting well.
Here are some virtual flowers and hugs for ya. I know they aren't the real thing, but at least you'll know we're all worried and care about you, and want to see you get better.
:icon_bunch: :icon_hug: :icon_bunch: :icon_hug: :icon_bunch: :icon_hug: :icon_bunch: :icon_hug:
Allie :icon_flower:
Quote from: Alainaluvsu on July 18, 2014, 06:35:28 PM
They're going to set me up with a social worker in the hospital. Not sure if they know something I don't know about my test results...
I wouldn't read too much into it, from my experience none of that is uncommon. It has more to do with evaluating your current support systems, possbile accommodations you may need and matching you with the appropriate resources upon discharge. I can't even begin to imagine what this must be like for you. Hope you are able to get some more rest tonight.
*hugs*
lol... IDK if I'll sleep well tonight either. I'm getting an MRI on my spine shortly, and who knows when I'll have my spine tapped. All I'll be thinking about is the results of my MRI and dreading a needle going into my spine.
Quote from: Alainaluvsu on July 18, 2014, 08:58:52 PM
lol... IDK if I'll sleep well tonight either. I'm getting an MRI on my spine shortly, and who knows when I'll have my spine tapped. All I'll be thinking about is the results of my MRI and dreading a needle going into my spine.
Those spinal taps are painful. And what's hard is you gotta stay completely still while they do it through the pain. Out of all the tests I had during my last hospital stay it was the one I feared the most.
Allie :icon_flower:
I had no idea this. Had been going on for days. I've been worried ever since I saw your Facebook comment.
What you're going through sounds like torture on every level. It it ain't right that you're looking at what you're looking at on top of being trans. Alaina I don't believe in miracles but, I love you, your no-nonsense approach on this board has long been appreciated by this girl and all I want is for a miracle to touch you and heal ya.
I had a spinal tap given by a resident and it was his first. He stuck me a couple times because he couldn't get it right. He hit a different set of nerves each time. It was crazy, with each stick, i felt burning in a different part of my body (hand, leg, etc.). He finally had to do it assisted by x-ray he was so bad at it. Even with all of this, it really wasn't that bad in my opinion. It wasn't pleasant by any means, but it wasn't horrible either. Seeing the needle and the anticipation was worse than the stick (or in my case sticks). I know it is easier said than done, but try not to get too worked up over it. As with most things the anticipation is usually far worse than the event. Hope everything goes smoothly, keep us posted!
Alaina I'm with you dear, as well in the hospital as well, hang in there with me as I'm putting my hope with you as well, currently I am having incontinence as well, so I have a catheter, I assume it probably has something to do with swelling. My left leg is only slightly there, they just mad me stand Omg, I thought I was going to die it hurt so bad felt like my spine was collapsing something akin to a slinky. Isn't life grand? And they are dumping narcotics down my throat.
But please do hang in there and if Ya want to pm me, feel free I'll even give you my number so we can text
OK passing out for now......... :'(
So I think they pushed my MRI back a day. Figures, this hospital is .... something else.
Quote from: calico on July 18, 2014, 10:56:54 PM
Alaina I'm with you dear, as well in the hospital as well, hang in there with me as I'm putting my hope with you as well, currently I am having incontinence as well, so I have a catheter, I assume it probably has something to do with swelling. My left leg is only slightly there, they just mad me stand Omg, I thought I was going to die it hurt so bad felt like my spine was collapsing something akin to a slinky. Isn't life grand? And they are dumping narcotics down my throat.
But please do hang in there and if Ya want to pm me, feel free I'll even give you my number so we can text
OK passing out for now......... :'(
Good luck sweetie. I'm with you in spirit and empathetically!!!
Quote from: Kylie on July 18, 2014, 10:53:27 PM
I had a spinal tap given by a resident and it was his first. He stuck me a couple times because he couldn't get it right. He hit a different set of nerves each time. It was crazy, with each stick, i felt burning in a different part of my body (hand, leg, etc.). He finally had to do it assisted by x-ray he was so bad at it. Even with all of this, it really wasn't that bad in my opinion. It wasn't pleasant by any means, but it wasn't horrible either. Seeing the needle and the anticipation was worse than the stick (or in my case sticks). I know it is easier said than done, but try not to get too worked up over it. As with most things the anticipation is usually far worse than the event. Hope everything goes smoothly, keep us posted!
Uh... awesome. I'm in a teaching hospital, too....
Quote from: Misato on July 18, 2014, 10:08:13 PM
I had no idea this. Had been going on for days. I've been worried ever since I saw your Facebook comment.
What you're going through sounds like torture on every level. It it ain't right that you're looking at what you're looking at on top of being trans. Alaina I don't believe in miracles but, I love you, your no-nonsense approach on this board has long been appreciated by this girl and all I want is for a miracle to touch you and heal ya.
I don't hand out compliments (I think most people know this), but I've always liked you for some reason. I think it's because you're very level-headed, I admire that. Thank you for your best wishes, and I'm grateful that you also do sincerely understand what I'm going through.
OMG Alaina. And now Calico. This has truly saddened my heart. I don't frequent Susan's much anymore, but popped in to browse the MTF forum and read your posts.
You gave me a hell'uva verbal kick in the ass one day that fixed a whole lot that was wrong in my life at the time. Your honest words changed my perspective, and helped get me where I am today. I know this means nothing in your situation, but I just wanted to let you know you mean a lot to me girl. Especially for that well placed boot in the butt.
I took care of my incapacitated father through a year of ghastly pain and incredible seizures caused by a rare brain cancer. But I've never been on the other side of the fence as a long term patient. It doesn't matter how much any of us sympathize, because what another person is feeling can never be fully imagined.
You're in my heart and prayers hun.
Quote from: Alainaluvsu on July 18, 2014, 11:17:36 PM
Uh... awesome. I'm in a teaching hospital, too....
Sorry, didn't mean to make the anxiety worse. My tap was in a small hospital in North Dakota, i have never heard of that happening to anyone else, and I am sure LSU wouldn't let someone that inexperienced do it without supervision. I was trying to say that even the worst case scenario wasn't that bad.
Also, any good hospital is a teaching hospital these days, that is actually a good thing. Most of the hospitals that are not teaching hospitals are not teaching hospitals because they lack the resources or expertise available to be one.
Quote from: Kylie on July 19, 2014, 07:58:34 AM
Sorry, didn't mean to make the anxiety worse. My tap was in a small hospital in North Dakota, i have never heard of that happening to anyone else, and I am sure LSU wouldn't let someone that inexperienced do it without supervision. I was trying to say that even the worst case scenario wasn't that bad.
Also, any good hospital is a teaching hospital these days, that is actually a good thing. Most of the hospitals that are not teaching hospitals are not teaching hospitals because they lack the resources or expertise available to be one.
After reading your post I did some research. It's very rare to be paralyzed from a spinal tap. Thanks :)
Quote from: kathyk on July 19, 2014, 07:42:38 AM
OMG Alaina. And now Calico. This has truly saddened my heart. I don't frequent Susan's much anymore, but popped in to browse the MTF forum and read your posts.
You gave me a hell'uva verbal kick in the ass one day that fixed a whole lot that was wrong in my life at the time. Your honest words changed my perspective, and helped get me where I am today. I know this means nothing in your situation, but I just wanted to let you know you mean a lot to me girl. Especially for that well placed boot in the butt.
I took care of my incapacitated father through a year of ghastly pain and incredible seizures caused by a rare brain cancer. But I've never been on the other side of the fence as a long term patient. It doesn't matter how much any of us sympathize, because what another person is feeling can never be fully imagined.
You're in my heart and prayers hun.
I never had any idea that I've truly touched as many people until people started responding to this thread (in thread and in messages). You all have no idea what this has done to my psyche. I thought this ... whatever it is .... has made me useless, but apparently not. I will get through this, I doubt it's fatal. And I promise I'll try to pay it back 10 fold :)
Please don't act like you don't mean anything to me, or that you can't help me. We all have different life experiences and everybody can apply their knowledge and help. Also, I remember you very well. Your wife (can't remember her name but it's on the tip of my tongue) would not accept you. I am so happy that you are getting on with your life and hopefully you are on a track that will make you a happier person.
I'd cry but I'm dry lol!
Hope things turn around and get better for you. Maybe it will all sort itself out and you can look back on this like a bad dream you got through. :)
Hi Alainaluvsu,
Please know that I wish the best possible future for you. Your transition has been an inspiration for me as I struggle to move forward with my transition to live authentically.
I know that I would feel great loss if your soul departed this realm.
I went through a time when I had extremely intense pain in my low back and legs, every 30 minutes it felt as if someone was stabbing my low back with a pair if Ice Picks right into my spinal nerves and down my legs. That slice of hell made me consider if I was even willing to live like that (very dark times). That crucible led to me thinking about my life deeply and what I regretted about my life. Once they found medication that could control the pain (after 7 months, X-ray guided injections of steroids very near the front of the spine), I decided that I needed to come to terms with my transgender feelings and over the next year ended up discovering the full and real me.
Fortunately, In my case, after a year of hell, I finally found a surgeon that could solve the problem (for now).
You are an amazing person, please fight for your future and know that I am among the many that care about you.
-Cindi
Since people seem to be focusing attention towards me in the thread (could've expected that), I've started to notice that many people seem to be scared of bugging me or getting under my skin. Honestly I wish I didn't seem so unapproachable. I'm fairly hard to offend and if I do get offended, I tend to get over it pretty quickly :) Please y'all, don't think you can't PM me with questions about anything you think I can help you with or whatever.
I may not be somebody who carries a lot of friends and I'm pretty hard to have a strong friendship with, but that doesn't mean I'm unfriendly.
Also, a little update.
The neurologist came in and did some tests. She said there's definitely signs of mylopathy in the spine. My brain doesn't look consistent with MS. She's thinking maybe a slipped disk or a compression. I'm not understanding how that could be since I'm experiencing symptoms above the neck (she even experienced muscle weakness on left eyelid). I definitely have something wrong with my spine she says, because the reflexes in my feet when she rubbed the bottom, my toes went up instead of down.
They wheeled me all the way down to get an MRI, but they couldn't do it because I needed to be sedated. I told the nurses over and over I would need it but they told me to tell radiology and they'd give me something for that! So I told radiology and they said they don't have that stuff there, especially on the weekend. So now I'm waiting to be sedated..... LSU is retarded.
Hi Alainaluvsu
Having MS and beeing trans I can understand what your going through. Not knowing whats going on and waiting for a diagnosis can be really hard. I realy hope it turns out to be something else/harmless. It was a good decision to go to hospital because, if it is MS, they can do something against the current attack and reduce/negate leftovers.
I dont know if this helps you, but if it is MS then a lot depend on the course over the years. There are a lot more people out there which have a good course than the ones with hard constraints. It finally helped me a lot to understand, that this disease is mostly random and that you can't do a lot beside living more or less healty, perhabs don't smoke and take the medication. So don't be frightened of a possible bad course, because you just won't know it until something happens. Don't let this spoil your life. I am on HRT and Copaxon (one of the possible medis) and currently this combination works fine. I had no attack since starting HRT, but i would expect that we have to interrupt for a short time cause we get a high dosis of cortisone and then restart after a while. For the cost of medication, the "old" ones where pretty expensive, but they developed some knew in the last years which are now on the market. One i know is based on fumaric acid and is said to be at least as good as the old ones. Fumaric acid is used since a lot of years for other (e.g. skin) disease and is exspected to be a lot less expensive. So i think the 70.000 are based on the old ones. Don't worry, get well first and then you will see :)
Sorry for dropping so much specific info, but in the time i waited for the diagnosis, it helped me a lot to get first hand information. Some facts in the web about MS are painted pretty dark. It's not something I would take again, but its something I/we can live with. And sorry if this is hard to read. I just realized how much I got rusty in english :)
Get well soon and please tell us how it will run *hugs*
Deedo, thank you so much for that info. It was very helpful. As I just posted, the neurologist is starting to suspect spinal myelopathy and NOT MS. She straight up said my MRI from April and my CT from the other day do not indicate MS. However I'm still waiting for a spine MRI / tap, so who knows. She does acknowledge I am a strange case, because of how some symptoms above the shoulders are occurring. They could look at my spine and see a pinched nerve and 3 lesions. Who knows. My fingers are crossed but I'm still not walking.
BTW a little side note, the neurologist straight up asked if I had surgery. I know this offends some people but IDC. She went on to say if she had 20 grand she'd pay for it for me lol! (She's a resident).
So glad you're finding some friendly faces and support, most of all that you went in and seem to be getting better information and less speculation from your docs.
Alaina *hugs*. Fingers crossed for no MS.
Do you think this might might tied to rapid heart rates as well?
You have incredible courage to bear all these doctors, nurses and intrusive investigations and questions. I can only imagine how awfully vulnerable and exposed you must feel right now. You know, the neurologist doesn't sound so bad, after all, if she's willing to contribute! Crossing my fingers that some headway is made soon in explaining your bizarre condition.
Thanks for the update. Happy to hear they don't think it's MS.
Allie :icon_flower:
Quote from: Alainaluvsu on July 19, 2014, 12:32:57 PM
Deedo, thank you so much for that info. It was very helpful. As I just posted, the neurologist is starting to suspect spinal myelopathy and NOT MS. She straight up said my MRI from April and my CT from the other day do not indicate MS. However I'm still waiting for a spine MRI / tap, so who knows. She does acknowledge I am a strange case, because of how some symptoms above the shoulders are occurring. They could look at my spine and see a pinched nerve and 3 lesions. Who knows. My fingers are crossed but I'm still not walking.
BTW a little side note, the neurologist straight up asked if I had surgery. I know this offends some people but IDC. She went on to say if she had 20 grand she'd pay for it for me lol! (She's a resident).
I suppose that given she's one of your doctors her inquiry was fair enough. What a sweetheart though huh?
I hope you get better soon. I had a vertebrae in my neck misalign with the rest of my spine and that was aweful, the pain was unbearable and I couldn't really move my head or anything. I went to all of these different hospitals and they were useless loading me up on Valium saying they didn't want to do anything because it might damage nerves....
Then we found a chiropractor who said surgery wasn't even needed, and over like 6 months he fixed it when the hospitals hadn't done anything helpful in over a year.
Issues with the spine are no fun at all, but hopefully it is something they can just fix rather than something like MS.
Quote from: Alainaluvsu on July 19, 2014, 12:32:57 PM
Deedo, thank you so much for that info. It was very helpful. As I just posted, the neurologist is starting to suspect spinal myelopathy and NOT MS.
Really glad to hear that. :) This is why you should never assume the worst, until you are absolutely sure. I've found that practically every time I have ever assumed the worst about something, I have been wrong. ;)
Quote from: Alainaluvsu on July 19, 2014, 12:32:57 PM
Deedo, thank you so much for that info. It was very helpful. As I just posted, the neurologist is starting to suspect spinal myelopathy and NOT MS. She straight up said my MRI from April and my CT from the other day do not indicate MS. However I'm still waiting for a spine MRI / tap, so who knows. She does acknowledge I am a strange case, because of how some symptoms above the shoulders are occurring. They could look at my spine and see a pinched nerve and 3 lesions. Who knows. My fingers are crossed but I'm still not walking.
BTW a little side note, the neurologist straight up asked if I had surgery. I know this offends some people but IDC. She went on to say if she had 20 grand she'd pay for it for me lol! (She's a resident).
see their not all a bunch of meanies
Quote from: stephaniec on July 19, 2014, 07:55:05 PM
see their not all a bunch of meanies
I've never been treated poorly by medical professionals. That was never my worry. I just don't like the invasive procedures (urinalysis, etc).
Quote from: Miyuki on July 19, 2014, 07:15:17 PM
Really glad to hear that. :) This is why you should never assume the worst, until you are absolutely sure. I've found that practically every time I have ever assumed the worst about something, I have been wrong. ;)
Well that's why I assumed the worst :D ... but then again MS is not ruled out, I just had a spine MRI w/ and w/o contrast and may still need a spinal tap.
Quote from: Shantel on July 19, 2014, 04:44:45 PM
I suppose that given she's one of your doctors her inquiry was fair enough. What a sweetheart though huh?
She asked it in curiosity, I could tell. She sounded excited to get to know me. That question doesn't bother me if it's asked in the correct tone. I could tell she's not the kind of person to negate my gender based on my body parts alone.
Quote from: Evelyn K on July 19, 2014, 01:46:40 PM
Alaina *hugs*. Fingers crossed for no MS.
Do you think this might might tied to rapid heart rates as well?
No. The heart condition is probably an extra electrical accessory (an extra nerve) going to the heart. It wouldn't contribute to the other stuff, because that nerve is a 1 way nerve.
Another update:
I had my spinal MRI. I'll know the results when I know em. They're really reaching. They drew blood for stuff I had draws for 2 months ago. They also tested me for HIV. At least I'll know my HIV status in a few days. I doubt I have HIV, as I doubt neurological symptoms from HIV would predate any drop in immunity.
Did they test you for Lhermittes's sign? That's a pretty telling sign in MS and an easy test to do.
Did you have an injury at an early age? You don't tend to see spinal myelopathy in people under 50 unless there was an injury.
Quote from: Wynternight on July 19, 2014, 10:45:38 PM
Did they test you for Lhermittes's sign? That's a pretty telling sign in MS and an easy test to do.
Did you have an injury at an early age? You don't tend to see spinal myelopathy in people under 50 unless there was an injury.
No, and I've never experienced Lhermitte's sign. However Lhermitte's sign only happens if there's a lesion above a certain level on your cervical area.
And no. I've never broken a bone or missed school or work due to injury.
My mom said "To their eyes you are an anomaly. They may use you and dub a new type of symptom.. They'll call it Alaina disease" ... my mom has my sense of humor. As in, she jokes when I would joke lol.
Quote from: Alainaluvsu on July 19, 2014, 11:04:35 PM
No, and I've never experienced Lhermitte's sign. However Lhermitte's sign only happens if there's a lesion above a certain level on your cervical area.
And no. I've never broken a bone or missed school or work due to injury.
My mom said "To their eyes you are an anomaly. They may use you and dub a new type of symptom.. They'll call it Alaina disease" ... my mom has my sense of humor. As in, she jokes when I would joke lol.
Definitely an odd course. Keeping my fingers and toes crossed for some good news from you!
When I saw this thread and saw it was you I read it all, though I am a lurker more than a poster so you prob won't know me, back a few years ago when I was coming to terms with myself you really helped me a lot, even though you didn't know it . I won't repeat everyone else but keep it simple so.
Good luck. I really do hope it works out OK.
An update:
Last night I could stand on my weak leg, but my balance was still VERY bad when trying to walk and need a walker to do so. The spasms have nearly gone away. I haven't tried to stand yet, my legs tend to be really weak when I just wake up. Maybe this is the end? I hope not, until they figure this out lol. Because I know it's just going to come back worse, like it always does...
Glad to hear you're improving, but I'm worried that they've yet to work out what's happening.
Wishing you continued improvement, and an actual diagnosis.
Hugs,
Luna
I saw a neurologist from Tulane (they have a great neuro team). She said something was found in my spine as well (lumbar area). She's not sure what is what at this point in either my brain or my spine. The bones in my spine look fine, however, so it's not something simple like a pinched nerve, stenosis, or a disk problem. She said neither indicate MS though. She wants me to get another MRI on my brain and a spinal tap. That'll be tomorrow.
They're scratching their heads. Hopefully the spine tap will say something. I moved a bit on my brain MRI, so who knows what that was about
My right leg is still weaker than the left. Knee reflexes are there, but not ankle. Babinski reflex has gone away (at least on my left foot). It's all very strange.
Still thinking of you Sis! :(
Hang in there!
I think I know what you need... More estrogen!!!! ;-). Feel better sweetie, you're an inspiration!
Quote from: Alainaluvsu on July 19, 2014, 11:04:35 PMMy mom said "To their eyes you are an anomaly. They may use you and dub a new type of symptom.. They'll call it Alaina disease" ... my mom has my sense of humor. As in, she jokes when I would joke lol.
Well it seems like your mom is supportive of you right now. That's a good thing! If I lived a little closer, I'd totally visit you in the hospital. I have health problems myself and have my own ->-bleeped-<-ty days, lots of people do. Hang in there! :)
Quote from: Christine Eryn on July 20, 2014, 01:08:25 PM
Well it seems like your mom is supportive of you right now. That's a good thing! If I lived a little closer, I'd totally visit you in the hospital. I have health problems myself and have my own ->-bleeped-<-ty days, lots of people do. Hang in there! :)
Well thanks :)
My mom is the best.
Quote from: HeatherR on July 20, 2014, 12:13:17 PM
I think I know what you need... More estrogen!!!! ;-). Feel better sweetie, you're an inspiration!
I'm sure every medical professional in this building thinks differently lol. My E has tested over 1,000 in every test I've had for well over a year.
Quote from: Alainaluvsu on July 20, 2014, 01:24:17 PM
Well thanks :)
My mom is the best.
I'm sure every medical professional in this building thinks differently lol. My E has tested over 1,000 in every test I've had for well over a year.
what's for dinner
Alaina, I am so relieved you went to the hospital. I know being poked and prodded is a pain and I understand you dysphoria makes it so much worse. You are doing the right thing and we are all concerned about your health. Hang in there.
Quote from: Alainaluvsu on July 20, 2014, 10:06:12 AM
I saw a neurologist from Tulane (they have a great neuro team). She said something was found in my spine as well (lumbar area). She's not sure what is what at this point in either my brain or my spine. The bones in my spine look fine, however, so it's not something simple like a pinched nerve, stenosis, or a disk problem. She said neither indicate MS though. She wants me to get another MRI on my brain and a spinal tap. That'll be tomorrow.
They're scratching their heads. Hopefully the spine tap will say something. I moved a bit on my brain MRI, so who knows what that was about
My right leg is still weaker than the left. Knee reflexes are there, but not ankle. Babinski reflex has gone away (at least on my left foot). It's all very strange.
At least your spasms are going away. Your in my thoughts with hope you'll be better soon with an accurate diagnosis. I'm also very happy to hear it's not MS or stenosis. Hopefully your next MRI and Spinal Tap will point to what is causing your problem.
Take care
Talk soon
Allie
Quote from: Allyda on July 20, 2014, 02:57:11 PM
At least your spasms are going away. Your in my thoughts with hope you'll be better soon with an accurate diagnosis. I'm also very happy to hear it's not MS or stenosis. Hopefully your next MRI and Spinal Tap will point to what is causing your problem.
Take care
Talk soon
Allie
The spinal tap may actually
confirm MS. So I wouldn't go cheering yet. The unknown is scary....
Quote from: Cynthia Michelle on July 20, 2014, 01:35:53 PM
Alaina, I am so relieved you went to the hospital. I know being poked and prodded is a pain and I understand you dysphoria makes it so much worse. You are doing the right thing and we are all concerned about your health. Hang in there.
TBH the privacy thing hasn't been so bad. Nobody has had any trouble whatsoever with the gender stuff. Gotta love NOLA.
I will say this, she mentioned brain biopsy. She said she doesn't think it's necessary to get a neurosurgeon involved but it's still a possibility. That is something I'm scared to death of. They have to shave a half dollar out of hair off of my head. That would be devastating to me.... You guys have no idea how much I love my hair...
Well I love your hair so i can only imagine ;)
Quote from: Alainaluvsu on July 19, 2014, 08:54:16 PM
No. The heart condition is probably an extra electrical accessory (an extra nerve) going to the heart. It wouldn't contribute to the other stuff, because that nerve is a 1 way nerve.
Yeah what we talked about before, the pre-exitation thing. I'm on beta blockers for mine. Still working for me for 23 or so years to date.
So how's the weather there? Anything interesting to look at or do while you stay? Got a TV? Surfing on a tablet? Laptop? Food alright? Did you catch the eye of any residency fellows? Or nurses? ;)
Quote from: Evelyn K on July 20, 2014, 04:18:27 PM
Yeah what we talked about before, the pre-exitation thing. I'm on beta blockers for mine. Still working for me for 23 or so years to date.
So how's the weather there? Anything interesting to look at or do while you stay? Got a TV? Surfing on a tablet? Laptop? Food alright? Did you catch the eye of any residency fellows? Or nurses? ;)
The weather has been bipolar. It has rained 3 days straight and been sunny for 3 days straight too. I have a TV that only cycles up through the channels and I have to cycle through 70 channels to turn it off. I am on my touchscreen laptop though! The food is so great I've had takeout all week lol. And I did get a rather cute resident stick his finger in my butt. But most of the people I've interacted with were women, and that's not my thang. Right now I'm listening to music and texting my mom. Here's a tidbit of my moms convo:
Me: What am I going to do about hair if I need a brain biopsy??
Mom: Oh god. Get a wig. Or do an aunt-ah-momma wrap.
Me: Noooooo :(
Mom: I think it would be fashionable.
Me: They would only shave a little bit but Idk if I can go through that. I can handle the fact that they'll be removing a piece of my brain but I can't handle the fact that I'll have a gypsy hairstyle!!!
Mom: I would be more fearful of the other, taken a piece of brain, the tiny scare I could live with.
Me: But I have prettier hair than you do ;) My brain obviously doesn't work anyways.
Mom: Now look... I already had to deal with a negative comment from a stupid woman. Two in one day is a bit too much.
here comes superman/woman or bit of both (is that to long for a super hero name), before doing my anatomy degree i was a hairdresser depending where they do the biopsy a good hair stylist would be able cover up a bald patch by doing a disconnected layer it would just look like you have really defined layers may look a bit thin where it covers the bald patch but would only be noticeable close up, i had a client and she suffered from Alopecia Areata this bald was about the size of the palm of your hand and i managed to keep this covered for her.
Quote from: Alainaluvsu on July 20, 2014, 06:01:34 PM
Me: But I have prettier hair than you do ;) My brain obviously doesn't work anyways.
Mom: Now look... I already had to deal with a negative comment from a stupid woman. Two in one day is a bit too much.
Waaaaa Hahaha! :D That sounds so like someone I know, it is most mom-like Alaina!
Quote from: Alainaluvsu on July 20, 2014, 06:01:34 PM
And I did get a rather cute resident stick his finger in my butt. But most of the people I've interacted with were women, and that's not my thang. Right now I'm listening to music and texting my mom.
(exasperating) wellLL! :laugh:
Candy striper(s) for me please.
Quote from: Evelyn K on July 20, 2014, 07:26:24 PM
(exasperating) wellLL! :laugh:
Candy striper(s) for me please.
LOL Evelyn you're such a naughty chickster I feel compelled to rent a candy striper uniform and give you a real Auntie Shan finger wave you'll not soon forget and maybe a good spanking while I'm at it. :D ;D >:-) Oh don't get me going here, I'll get the boot for sure. ;D
Quote from: Elanore joey on July 20, 2014, 06:17:09 PM
here comes superman/woman or bit of both (is that to long for a super hero name), before doing my anatomy degree i was a hairdresser depending where they do the biopsy a good hair stylist would be able cover up a bald patch by doing a disconnected layer it would just look like you have really defined layers may look a bit thin where it covers the bald patch but would only be noticeable close up, i had a client and she suffered from Alopecia Areata this bald was about the size of the palm of your hand and i managed to keep this covered for her.
I went to school. My hair is difficult. It's thick so that's a plus, but it's fine and bone straight so it has a LOT of movement. It's also very stubborn with a very healthy cuticle so it doesn't hold a style well at all. My mom has been doing hair for 30 years, and my former friend does hair for movies and neither can even keep it parted in any other way than the natural part. It'd be okay til I got in the wind....
if i can find a picture of this client il send you a picture i guarantee no matter how fine your hair is it will cover up a very large area
If you dealt with my hair, you'd understand that it's extremely difficult to 1) style, 2) keep still. Yeah, you can gel it but that means I'd have to gel it every day, which means I'd have to shampoo it every day, which means I'd be making my hair unhealthier. My hair is beyond stubborn. You can apply heat all day long and it will not go in any different direction. My instructor styled it one day and by lunch it was back to normal. She used so much hairspray and gel you could smell it from across the room. My former roommate used to say I had "Japanese hair". He managed to put curls in it by putting a glob of gel AND breaking the hydrogen bonds, but 6 hours later it was relaxing... Not only that, but he learned that you have to roll it the OPPOSITE way in which you want to curl it. It's a bitch, straight up lol. Thank God my hair is bone straight. I'd need a relaxer to keep straight hair otherwise.
To give you an idea of how the cuticle is, it literally feels like glass.
The other option would be to cover the area using color for example the nearest color to your natural shade in a triflectives range with a double N tone base and finally pearl mix tone, would give a very nice shattered effect with a heavy base tone this with either a disconnected layer or a reverse graduation only thing is with a reverse graduation you would have go to about shoulder length
Quote from: Elanore joey on July 20, 2014, 09:23:55 PM
The other option would be to cover the area using color for example the nearest color to your natural shade in a triflectives range with a double N tone base and finally pearl mix tone, would give a very nice shattered effect with a heavy base tone this with either a disconnected layer or a reverse graduation only thing is with a reverse graduation you would have go to about shoulder length
Whoosh, right over my head. What did you say?
I wouldn't go shoulder length. I have disconnected layers now (the photo was before my current haircut). And on top of that I don't think putting color on top of a surgical site would be a good idea. Although I am a level 1 naturally (hard to believe since I'm white, I know, but it's true) so I probably wouldn't even need any other mixing other than maybe a bit of blue, or blue-violet to offset the tone of the skin (what do you think?). I JUST asked a support group and somebody said it starts growing back pretty much instantly. Since I have VERY thick hair (my hair is a ton of work, I'm telling you lol... I'm glad my mom is a stylist), and it grows about .75" a month, it'll probably be pretty unnoticeable anyways. I'll probably just leave it alone and have a war wound for a few months and a reminder for a couple years lol....
I know I'd be all kinds of upset at the prospect of losing even a little of my hair. My last boy haircut was in October of 2012 and I've been growing it out ever since. To have to start over again even in just a spot, ack!
Still, I'd think after a little while you could get extensions to fill the spot in as the hair starts to grow back. My hair was pretty short still when I had mine put in. Probably would still be an investment over time but, there's a chance it'd be a good one.
May that miracle find you soon!
Quote from: Alainaluvsu on July 20, 2014, 09:59:24 PM
I wouldn't go shoulder length. I have disconnected layers now (the photo was before my current haircut). And on top of that I don't think putting color on top of a surgical site would be a good idea. Although I am a level 1 naturally (hard to believe since I'm white, I know, but it's true) so I probably wouldn't even need any other mixing other than maybe a bit of blue, or blue-violet to offset the tone of the skin (what do you think?). I JUST asked a support group and somebody said it starts growing back pretty much instantly. Since I have VERY thick hair (my hair is a ton of work, I'm telling you lol... I'm glad my mom is a stylist), and it grows about .75" a month, it'll probably be pretty unnoticeable anyways. I'll probably just leave it alone and have a war wound for a few months and a reminder for a couple years lol....
I wouldn't worry about it. I had a couple of cysts removed from my scalp a few years ago and I had the same sort of problem. I just left things as they were and let it grow back. There was enough hair that once the site healed and I had the stitches removed, you couldn't really tell. I looked weird in the meantime, though, since I had my hair pulled up and back in a few places that certainly didn't look like I was making some kind of fashion statement. :D But it was just something that I had to deal with.
Quote from: Alainaluvsu on July 20, 2014, 08:21:14 PM
I went to school. My hair is difficult. It's thick so that's a plus, but it's fine and bone straight so it has a LOT of movement. It's also very stubborn with a very healthy cuticle so it doesn't hold a style well at all. My mom has been doing hair for 30 years, and my former friend does hair for movies and neither can even keep it parted in any other way than the natural part. It'd be okay til I got in the wind....
I know what you mean all too well. Though I do currently have 3 spots that are filling back in (Avodart's been a blessing!) my hair is bone straight and thick over most places, and won't hold any style more than an hour, especially in this humidity. Also if I part it any way other than my natural part one gust of wind and it's all over.
Allie :icon_flower:
Quote from: Alainaluvsu on July 20, 2014, 09:59:24 PM
I wouldn't go shoulder length. I have disconnected layers now (the photo was before my current haircut). And on top of that I don't think putting color on top of a surgical site would be a good idea. Although I am a level 1 naturally (hard to believe since I'm white, I know, but it's true) so I probably wouldn't even need any other mixing other than maybe a bit of blue, or blue-violet to offset the tone of the skin (what do you think?). I JUST asked a support group and somebody said it starts growing back pretty much instantly. Since I have VERY thick hair (my hair is a ton of work, I'm telling you lol... I'm glad my mom is a stylist), and it grows about .75" a month, it'll probably be pretty unnoticeable anyways. I'll probably just leave it alone and have a war wound for a few months and a reminder for a couple years lol....
You shouldn't have any problems with the area if you color it as long as you put barrier cream over the incision. When I was working for goldwell in there academy in London I had a client with a permanent cerebral drain in and I used to colour her hair pink and purple if I remember rightly
Well what's a good mix for level 1 to conceal the skin?
A double N tone which is often what is used to to cove whit or grey hair. also you could add some warmth to it with either a copper mix or red mix tone as the reflect the light instead of absorbing the light making the thinner area less noticeable
Quote from: Elanore joey on July 21, 2014, 07:15:57 AM
A double N tone which is often what is used to to cove whit or grey hair. also you could add some warmth to it with either a copper mix or red mix tone as the reflect the light instead of absorbing the light making the thinner area less noticeable
Really? I would've thought a copper / red would bring out the skin to a different color, kinda like trying to highlight RCR hair with blonde. And why NN?
it would make your hair appear think meaning no one would notice the bald area
This may be a pretty big update.
About the accident:
I have a friend in Shreveport who is a personal injury attorney. Basically I need to wait for a police report before I can proceed. However, he said since I may have a disease / disorder, I am easier to injure. I need to document any symptoms I had before, and any I have after and whether they've increased or decreased. This would give me pain and suffering if I can show this. Also, they may be held responsible for this hospital visit. I've been here for 5 days already and have had numerous tests (including what will be my 2nd MRI today, and a spinal tap). The thing is, the state will probably pay the hospital bill. I don't know if I can be compensated on top of the state paying the bill. If so, I'll be taken care of until I can collect disability if I can qualify. God works in mysterious ways....
About the hospital:
A TEAM of doctors came in (like, 10... they were almost lined up out the door). The 4th neurologist I've seen since I've been here did a bunch of tests. She noticed I had Hoffmans reflex, which went away minutes later, then came back seconds later after that. She also noted the typical muscle weakness. She also noticed that when she tested my reflexes of my right arm, I kicked her with my right knee. They want the brain MRI done right away, and the spinal tap done today or tomorrow. They all walked out of the room with the main doctor saying they need to relook at the spine MRI.
I was EXTREMELY tired after those tests. All they had me do was push and pull them with all my might with my arms, legs, hands, and feet. My reflexes worked (or didn't work in some instances) differently today than they did yesterday.
Sending you my best wishes.
I'm glad to hear that something good came of the accident. I hope the doctors come back with good news as soon as possible; the waiting is often the worst part.
Isn't it kind of fun to have a line of doctors out the door all wanting to observe you? ( my record was 20 something, but my dad only let 16 in because I was nine and he was worried it was overwhelming)
Please keep in mind that even the worst case scenario ("there's nothing we can do") isn't the end. Those sixteen doctors (plus the director of the department) all said I would be blind by about 2002. My dad wouldn't accept the answer and eventually found a doctor who disagreed with them so we flew across the country to see him and I have been stable since 2001.
I am very glad that you are fighting to stay strong. I have been really inspired by a lot of your posts and was very worried when this thread started.
Please get well soon, and keep us updated! I'm sending you my best wishes for a speedy recovery!
Thank you :)
I think the most frustrating thing, and even something that makes me question myself sometimes, is the fact that tests show very little. I've thought I was just imagining this stuff from time to time. But then they come in and do reflexes and find stuff wrong. And they seem so baffled at everything.
Quote from: Alainaluvsu on July 21, 2014, 12:08:07 PM
Thank you :)
I think the most frustrating thing, and even something that makes me question myself sometimes, is the fact that tests show very little. I've thought I was just imagining this stuff from time to time. But then they come in and do reflexes and find stuff wrong. And they seem so baffled at everything.
You would tend to think your reflexes being off would point to a neurological problem. Them finding things wrong lets you know you aren't imagining things. You could have some sort of delayed onset injury that wasn't discovered at the time of your accident. Just a few thoughts.
Allie
Quote from: Allyda on July 21, 2014, 12:13:57 PM
You would tend to think your reflexes being off would point to a neurological problem. Them finding things wrong lets you know you aren't imagining things. You could have some sort of delayed onset injury that wasn't discovered at the time of your accident. Just a few thoughts.
Allie
I doubt it. Maybe. Who knows. But these symptoms predate that accident by a long shot.
Another thing that annoys me: I need to bring proof that I'm prescribed E before they give me any. Luckily I have an rx sitting at the house.
I guess I can't be totally crazy. They gave me a rx strength laxative yesterday and have had a stool softener twice a day since I've been here and still haven't gone...
Hopefully you have someone who can bring the rx to you. Couldn't your Endo's office just call them? That is how I stay on my meds when in hospital. Again, just a few thoughts.
Allie
Best wishes.
Quote from: Allyda on July 21, 2014, 12:22:05 PM
Hopefully you have someone who can bring the rx to you. Couldn't your Endo's office just call them? That is how I stay on my meds when in hospital. Again, just a few thoughts.
Allie
My roommate will bring it. The doctor that rx'd it is only in office on Fridays. He's not an endo. In this town, any doctor will give you HRT pretty much....
Quote from: Alainaluvsu on July 21, 2014, 01:56:02 PM
My roommate will bring it. The doctor that rx'd it is only in office on Fridays. He's not an endo. In this town, any doctor will give you HRT pretty much....
Great to hear. I gotta go out myself and spend my last few dollars on some OTC medicine. I just fixed my hair too but I know in this humidity it won't last hardly more than an hour if that, lol!! I'm tempted to just throw it into a pony and forget it.
Wishing you all my hope for better news regarding your condition soon.
Allie
Quote from: Allyda on July 21, 2014, 02:05:04 PM
Great to hear. I gotta go out myself and spend my last few dollars on some OTC medicine. I just fixed my hair too but I know in this humidity it won't last hardly more than an hour if that, lol!! I'm tempted to just throw it into a pony and forget it.
Wishing you all my hope for better news regarding your condition soon.
Allie
Get a good moisturizing conditioner. Your hair wont frizz nearly as much.
Quote from: Elanore joey on July 21, 2014, 08:11:46 AM
it would make your hair appear think meaning no one would notice the bald area
Alaina might be interested in Toppik spray on colored hair fibers. Depending on where they shave it might work out pretty well. Might just have to change your hair part. Temporary solution to a temporary problem.
(https://www.susans.org/proxy.php?request=http%3A%2F%2Foi57.tinypic.com%2F2pqlvma.jpg&hash=3ab12bdefeaeda1af1c1da49d12b99ed3a25c288)
Quote from: Alainaluvsu on July 21, 2014, 02:33:29 PM
Get a good moisturizing conditioner. Your hair wont frizz nearly as much.
a salon brand is the best the stuff what you buy off the shelf is full of silicone more silicone than whats on sunset boulevard this is not good for your hair
do you agree alaina
and if you think it expensive compared to off the shelf, if you use the correct amount it will last 3 times as long
Quote from: Elanore joey on July 21, 2014, 02:47:45 PM
a salon brand is the best the stuff what you buy off the shelf is full of silicone more silicone than whats on sunset boulevard this is not good for your hair
do you agree alaina
and if you think it expensive compared to off the shelf, if you use the correct amount it will last 3 times as long
I absolutely agree. I use Biolage (forget the line, I'm high on Valium atm, needed it for the MRI I just had). It works very well. The avatar photo I'm 1 block from the Mississippi River in the Quarter in April. No frizz whatsoever. It takes a few applications (Not at once...) but it makes all the difference. Don't get it from anywhere else but a salon or beauty supply store (you need a license to get it there). If you get it at Walmart, it's either black market, expired product, or failed the quality control check.
Remember to wet warm, shampoo, rinse warm, shampoo, rinse warm, conditioner, rinse cold.
Quote from: Evelyn K on July 21, 2014, 02:41:47 PM
Alaina might be interested in Toppik spray on colored hair fibers. Depending on where they shave it might work out pretty well. Might just have to change your hair part. Temporary solution to a temporary problem.
(https://www.susans.org/proxy.php?request=http%3A%2F%2Foi57.tinypic.com%2F2pqlvma.jpg&hash=3ab12bdefeaeda1af1c1da49d12b99ed3a25c288)
My hair will not stay in any part I give it. It'll go right back to normal. It's extremely stubborn.
I've found with my hair the Aussie or Pantene Pro-V leave in conditioners work well. When I use the rinse out kind my hair stretches causing breaks -something it don't do with the leave ins.
Allie :icon_flower:
Quote from: Alainaluvsu on July 21, 2014, 04:14:04 PM
I absolutely agree. I use Biolage (forget the line, I'm high on Valium atm, needed it for the MRI I just had). It works very well. The avatar photo I'm 1 block from the Mississippi River in the Quarter in April. No frizz whatsoever. It takes a few applications (Not at once...) but it makes all the difference. Don't get it from anywhere else but a salon or beauty supply store (you need a license to get it there). If you get it at Walmart, it's either black market, expired product, or failed the quality control check.
Remember to wet warm, shampoo, rinse warm, shampoo, rinse warm, conditioner, rinse cold.
My hair will not stay in any part I give it. It'll go right back to normal. It's extremely stubborn.
We should ask for our own topic on this site giving advice about hair issues
Quote from: Elanore joey on July 21, 2014, 05:03:46 PM
We should ask for our own topic on this site giving advice about hair issues
Here we go girls. I just started a new thread where we can give our favorite tips and products for care of your beautiful locks of hair: https://www.susans.org/forums/index.php/topic,169783.0.html (https://www.susans.org/forums/index.php/topic,169783.0.html)
Allie :icon_flower:
Quote from: Elanore joey on July 21, 2014, 05:03:46 PM
We should ask for our own topic on this site giving advice about hair issues
Yeah, we need a section. I'd spend so much time in it if it was popular.
Hair is prolly one of the most overlooked aspects of a good presentation. Nothing beats a great style. Trust me my hair sucks and I just ruined it by dying it twice in a week and now it's black and was red and now is black and red, but kinda turning brown. But at least it isn't a mess of tangled dry brittle hair. Eh, it's getting better.
Quote from: Alainaluvsu on July 21, 2014, 07:19:51 PM
Yeah, we need a section. I'd spend so much time in it if it was popular.
I started this thread about hair care products. So we had a place to talk about these things.
https://www.susans.org/forums/index.php?topic=169783.new;topicseen#new (https://www.susans.org/forums/index.php?topic=169783.new;topicseen#new)
Allie :icon_flower:
Okay, and update.
I woke up this morning to a med student standing over me, by himself. He goes on to tell me that the new MRI believes the spot they found before to be demyelinating. For those who are not familiar, MS is a demyelinating disease where multiple lesions come and go over a course of time in the CNS. I ask him a basic question, "Is it growing?" and he doesn't ->-bleeped-<-ing know. They send a med student in here to tell me this, alone, and he doesn't even have enough experience to find my tendons to test reflexes with.
I'm so damn mad and scared... and just emotional.
The doctor said "Clinically Isolated Syndrome". Basically I have 1 lesion that indicates MS, I need 2 to have an official diagnosis.
On the brighter side, the doctor said she had no idea I was transgender.
Quote from: Alainaluvsu on July 22, 2014, 10:32:42 AM
The doctor said "Clinically Isolated Syndrome". Basically I have 1 lesion that indicates MS, I need 2 to have an official diagnosis.
On the brighter side, the doctor said she had no idea I was transgender.
well, at least the brighter side made you feel good.
Quote from: Alainaluvsu on July 22, 2014, 10:32:42 AM
The doctor said "Clinically Isolated Syndrome". Basically I have 1 lesion that indicates MS, I need 2 to have an official diagnosis.
On the brighter side, the doctor said she had no idea I was transgender.
I'm very sorry to hear this. I was really hoping you would get better news. I wish I had some wisdom to give. Hopefully the fact you only have 1 lesion offers some comfort. I truly wish I had better words. As Stephanie pointed out, at least the bright side you mentioned made you feel good.
Allie
Hi Alaina
I am really sorry to read this :-\ All my best wishes are with you. Please try to stay calm and wait if they find anything else. I hope they won't. I know it is not easy and worries one a lot, but currently they "just" found one spot. They need more evidences for a diagnosis (e.g. a second one or anonther separete/later attack). As I understood from my doctor in the beginning spots can sometimes also be created by other things. So lets hope the best. As for the positive side: they can now start to give you medis, e.g. high concentrated cortison, which will fill up the holes in the border between the nerves and the blood (these things give the danger of infections causing the spots) and which will fight possible already excisting infections. So there is a good chance that the symptoms from this attack vanish quickly.
We are all with you! *sending a lot of hugs*
Alaina ... did you know we luvs you? ^-^
I was reading up on demyelination and its incidence with MS. I'd like to remind you that MS doesn't always play a causal relationship.
You seem to be a curiosity to them ;) I'm sure it's in your favor. Can we hope together that this can be reversed and treated, perhaps other underlying factors play into this somehow? Disease manifestation encompasses a multitude of factors. I'm glad the doctors are pinning this down.
Let us know your thoughts.
(I wish I was there with you.)
Well, I'm home now. I had the spinal tap and I'll know in a few weeks what the results are. It actually wasn't that bad, I felt 1 really bad pain and it lasted for about 5 seconds, maybe less. She used a lot of Lidocaine and some other local anesthetic.
I feel fantastic about the neurologist I am following up with. She is a resident in her last year, but she is very knowledgeable about current studies in her field. I looked her up, and she was an undergrad at Berkely, and a graduate at Emory Medical School (ranked 24th in the nation for Medical Schools). Unfortunately, she wants to specialize in epilepsy. I told her that my nephew has LGS (Lennox Gastaut Syndrome), and she kinda mumbled, "Oh that's the worst one".
She's the one that asked if I've had surgery yet. She seemed very sympathetic to transsexuals. More importantly, she said I can continue my HRT without worry. This tells me that HRT is not a threat to my brain like that silly nurse practitioner said at another clinic.
This is what I posted on Facebook:
"I'm so happy I live in a place where I don't have to worry about prejudice while I'm in a hospital. The people here at LSU in NO have almost all been very respectful, nice, and caring, despite my gender identity and skin color. I didn't think this was possible in Louisiana."
And I mean it.
OH, and I'm HIV negative.
Alaina, I am so happy that you are out of the hospital, I came on for a moment to update and see this, also glad they are working on finding an answer to what is wrong. I will say one thing, and this only because I have been in the spot, but regardless of what they discover and determine, it at least gives you an answer.
I'm still praying and wishing the best for you and am glad you still get to have hrt, hang in there, and it's nice to be out of the hospital :)
Sounds really positive on your part Alaina hope the results will be something you can live with. And you are HIV negative woo hoo that means I'm putting you on my list! :D ;D Don't mind me I'm full of it! Just been stressed out with my own stuff while worrying about you two girls. :icon_bunch:
yea it's nice to know the HIV status I was worried about it for a long time until I ended up in the hospital and told me I was negative.
I'm very relieved your home Alaina and you have all my hopes whatever they find can be easily treated or dealt with so you can move on.
Also congrat's on the negative HIV results. I know how much of a relief that can be.
Hugs :icon_hug:
Allie :icon_flower:
So glad you are home and done with all the tests. Even though I did a poor job of it, I told you the spinal tap wasn't that bad! Also good to hear that you have a good qualified doctor that you trust and feel comfortable with. Those can be very hard to find these days. Sending positive thoughts your way.
*hugs*
hi Alaina! I know you we don't know each other at all but you were a massive inspiration to me back when I was beginning hrt. I was having serious doubts about myself but thanks to your youtube video, I kept reminding myself that the changes were gonna take time and not happen overnight. So in a way you kept me sane. Thank you!!!
Super happy to see you're at home! I can't imagine what it must of felt like going through all of that. Wish you the best! <3
I just wanted to say thank you to everybody who gave me the kind words. It really helped me through a very rough time mentally. You all have no idea how much it means to me to hear the overwhelming concern and that I have touched the lives of so many of you. Honestly, I had no idea that I've helped so many.
Thank you all, from the bottom of my heart. ♥
no problem
For me, demyelination was reversible, as soon as the causative problem was no longer present. Present or not present, I also believe that stem cell therapy will be a huge help for repairing demyelination, in the near future. Without telling you pie in the sky lies that your going to get well and everything is going to be fine, I want you to know that at this time there is some damage that your body is quite capable of healing.
**hugses**
Quote from: Alainaluvsu on July 23, 2014, 08:01:41 AM
I just wanted to say thank you to everybody who gave me the kind words. It really helped me through a very rough time mentally. You all have no idea how much it means to me to hear the overwhelming concern and that I have touched the lives of so many of you. Honestly, I had no idea that I've helped so many.
Thank you all, from the bottom of my heart. ♥
You're an inspiration more than you know.(https://www.susans.org/proxy.php?request=http%3A%2F%2Foi58.tinypic.com%2F27xbtc.jpg&hash=f504a3bcdd56e5c1bf6671b43395b18e86ad93c6)One of those rising stars in constellation susans.
Keep hitting us back with these updates Alaina.
Quote from: Suziack on July 24, 2014, 01:38:26 PM
For me, demyelination was reversible, as soon as the causative problem was no longer present. Present or not present, I also believe that stem cell therapy will be a huge help for repairing demyelination, in the near future. Without telling you pie in the sky lies that your going to get well and everything is going to be fine, I want you to know that at this time there is some damage that your body is quite capable of healing.
Awesome sauce. This deserves a bump for Alaina.
Ok just a shot in the dark here Alaina but... I'm watching Fox News this morning. I'll duck for those of you that are gonna' throw things at me. But gimme' a break, Twisted Sister is on there this morning. But they had a doctor talking about Lyme's Disease. He said there are over 100 variations of the disease and a lot of them go undiagnosed and misdiagnosed. Some as MS even. Sound familiar? Nearly 300,000 people in the US are believed to be infected with it but only 30,000 is dignosed with it. A lot of strains this doctor said mimics other diseases. Did they even consider Lyme's Disease while you were getting all the tests? I know SE La doesn't have too many ticks but did you go anywhere before the symptoms? Like Covington or Hammond or north of I 10 or I 12 where there are ticks? It's just a shot in the dark but it it's amazing what they were talking about possible symptoms and how often it's misdiagnosed and especially how it mimics other conditions.