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Old 04-13-2008, 12:41 PM #12
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Quote:
Originally Posted by beautytransforming View Post
I am assuming IVSM = IV steroid meds? I'll have to look for the abbreviations.

I have read 2 books already, everything on the NMSS page (printed out most of it for my family as well). And alternative pages and a host of other pages..LOL I am a research fanatic, and when I get something to research I don't stop till I have found the answer to every single questions I want. I researched Gastric bypass for 4 years - 2 for my mom, then 2 more for me. I researched my doc for about 6 months and I had the best!!! LOL

Your history really puts things in perspective for me when it comes to this disease. Do they think you had this a while before you were diagnosed? Do you use a DMD? And if you don't mind (I know us women never tell our age) how old were you when you were diagnosed?

Thanks for the info =)
I have no problem answering your questions. In fact, if you go to the Community Feedback Forum, you can read my Bio since I am a moderator (but not in this forum.) I post here as a member of the forum, not as a moderator!

IVSM = IV SoluMedrol = IV methylprednisolone.

I was dx'd in 2001 after an acute exacerbation that left me paralyzed and numb from the waist down for 3 weeks. About 2 months later I had another exacerbation that clinched my dx. No previous hx. I was 48 and had gone back to college full time. I am now 55. I have been on Betaseron, Beta + Methotrexate, Tysabri, and Copaxone. I am currently in a clinical trial for Tovaxin. So far, nothing has slowed down the rate of exacerbations until the last two years. I have gone from 4+ to 2 per year. I have not progressed to SPMS, but right on the verge. Since I have been in this clinical trial, I have no been privvy to my MRIs and blood work, nor do I know if I am receiving placebo or real drug, it's a double blind trial.

My exacerbations leave me totally non-functional. As my neuro puts it, I am either 100% or zero. I work full time and so not being able to function is not an option. Waiting out the exacerbation is not an option for me. I tried that once, and it only got worse so my theory is get started on IVSM and stop the inflammation as soon as possible.

I have annual bone density scans, and they have been great. No signs of bone deterioriation whatsoever.

I am not a candidate for IViG to treat exacerbations due to my long list of allergies.

Each of us is different and we all react differently to meds...we all choose our own method of treatment. It's a personal choice. I respect everyone for their choice...

Comment on Lady's post....not everyone has the same reactions to steroids...I for one have almost the exact opposite reactions as most people do...and they do help me recover quickly from the exacerbation. That's why I choose to go that route. As I already stated...each of us is different...it's a personal choice. I respect everyone's choice.
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Dx: MS 2001 CRPS 2009




“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford

Last edited by tovaxin_lab_rat; 04-13-2008 at 12:44 PM. Reason: added comment
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