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

Allie

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!    Don't mind me I'm full of it! Just been stressed out with my own stuff while worrying about you two girls.

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
Allie

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**