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02-11-2008, 01:54 PM
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Junior Member
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Quote:
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. 
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Sheila . "Go over, go under, go around, or go through, but never give up!" |
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02-11-2008, 02:29 PM
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#2 | |||
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In Remembrance
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WELCOME to all you lovely people, who have just recently joined us. Happy you found us and looking forward to getting to know you better.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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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!
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