Failing Health

[LivingTheDream]

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  . 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

[Alainaluvsu]

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...

[Allyda]

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.


Allie

[Kylie]

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*

[Alainaluvsu]

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.

[Allyda]

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

[Misato]

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.

[Kylie]

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!

[calico]

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......... 

[Alainaluvsu]

So I think they pushed my MRI back a day. Figures, this hospital is .... something else.

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!!!

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....

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.

[kathyk]

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. 

[Kylie]

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.

[Alainaluvsu]

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

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!

[Joanna Dark]

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.

[Cindi Lane]

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

[Alainaluvsu]

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.

[Deedo]

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*

[Alainaluvsu]

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).

[Ducks]

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. 

[Evelyn K]

Alaina *hugs*. Fingers crossed for no MS.

Do you think this might might tied to rapid heart rates as well?