Quote:
Originally Posted by RedPenguins
As of Monday, it will be 30 days on Copaxone...and as I confirmed my delivery of the next box of the shots - I realized how badly I want on Tysabri - and is this a waste of time - b/c I know I need to be clean from Copax before starting. When I last saw neuro he said we should wait 3 months before starting Tysabri. I think that is b/c it is hard to get approved or whatever unless you fail the other meds. So I said - well what if I lied and said I had a bad reaction - and he said he couldn't lie...but he couldn't stop me. Meanwhile, two days later, i started having reactions to the darn shots.
The symptoms from the flare-up lessened quite a bit with the IV treatment - but that was 3 weeks ago - and in the last week - they have started coming back stronger - though not nearly as bad as they originally were. I have never gotten any feeling back in the right side of my face/head. Neuro said the steroids take time to work and that an exacerbation can take 2 months to go away.... I've been in this one, I guess, since Dec 22 (when the numbness started). I'm really getting scared - thinking that the effects of the steroids are gone - and i'm getting worse. Not sure if it works that way - but if it does, I feel really screwed here. (Where can I send my complaint?! LOL)
I'm sorry - I just realized how long this is - I think the shock of it all is wearing off - and I'm beginning to freak out. I had to go get a shower chair and walker this week  I sleep a lot - though I take something for the fatigue (provigil - though it doesnt do enough even at 400mg a day). I feel like a piece of dead wood most days. I hate having these limitations - like if I do one errand a day - then I'm toast. My brain shuts down and I can't function anymore. i keep saying that if my disability was more physical I'd be okay - but it's very cognitive and brain centered right now - I can't walk not b/c my legs don't work - but b/c I'm so wobbly from being dizzy and the vertigo and not being able to see well. I will be on the phone and on hold with someone - and I'll forget who I'm on the phone with. Now, if I were 60, I'd say, okay...but I'm 32...not so normal!
I'm feeling like a wreck. I feel the depression creeping in - I don't know if I'm strong enough to fight this all....
Glad these boards are here....and I certainly hope someone read this.... (sorry so long)
Thanks,
~Keri |
Keri,
I can say I know exactly how you feel. I've been off work since October 15th with what my neuro termed a severe exacerbation. I had 5 days IVSM (1 gram per day) outpatient which did nothing and was then admitted to the hospital and was given another 6 days same thing. The numbness you describe and feeling like dead wood sounds like what I have felt every day. I could not walk for almost a month. Now just going to the grocery store wears me out, never mind a full work day! The lack of cognitive function was unbelievable. I would pick up the phone to answer it and then not remember what I was supposed to say. I would just stare at it like "what am I doing???" I too have had to use a shower chair and stuff just to get by.
I am also on Copaxone which I continued injecting daily through the entire ordeal.
Please read this next part with caution as everyone is different. I have read many threads and done research on side effects of Copaxone. Some say yes, others say no - just like with almost everything. But I have read that some have experienced overwhelming fatigue while on it along with sleep disturbances.
I chose to discontinue use of Copaxone one week ago. I must say that I have noticed my energy level seems to be increasing slightly day by day. By no means am I back where I was, but if they say you have to be free of Copaxone for 3 months before you can start Tysabri then maybe that's how long it will be before it's all out of my system.
You are strong enough to make it!! I truly thought I was going to end up in a wheelchair but it's getting better. It does take a lot longer than I thought it would though and that's why I wrote here. I just wanted to give you some encouragement and let you know that it really might take months but there is hope.
Take care and if I can help or just listen, feel free to PM me.
