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Old 12-02-2013, 08:10 AM
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clarkstar clarkstar is offline
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Join Date: Aug 2010
Posts: 316
10 yr Member
clarkstar clarkstar is offline
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clarkstar's Avatar
 
Join Date: Aug 2010
Posts: 316
10 yr Member
Default if not steroids, what helps recovery?

hi everyone! i have been plagued with "relapse" after "relapse" since last december. i went inti the hospital for iv steroids in may, and was recovering for about 2 weeks before another relapse, then another round of steroids, about 3 weeks of strength returning and rehab, rinse and repeat every 3-4 weeks. coupled with multiple falls in my old apartment stairwell and then falls in my new apartment bathroom, which brought on sciatica in my right buttock/leg, which also happens to be the leg affected each time i have a "relapse".

i have been told that steroids are not a long term solution, but its the only thing that helps me recover to nearly normal-for-me baseline of being able to use a walker for anything more than a few steps. currently i am unable to even use my wheelchair for more than around my tiny apartment, as my arms lack the strength to ambulate the chair down the hallway to the elevator.

my question is, if i cant have steroids , how am i to recover? i start tysabri december 4th, but i know the ty isnt going to change my current state, and my baseline has gotten worse each time, this last time i was discharged from rehab center having "reached full potential" at which point i was confined to a wheelchair xcept for 10 or so steps, and about 1 month later 1 can take about 5 steps and am in extreme pain most of the time. i am on 80mg of baclofen a day, 2700mg of gabapentin per day, 10mg amitriptylin, and taking advil and vicodin to help with the pain...

when i first was diagnosed, i was on a walker for about 6 months, but i was never in the pain that i am in now, or this constant rollercoaster of extreme right sided weakness, steroids, recovering for a few weeks, extreme right sided weakness, etc and so on.
its getting hard to see the light at the end of the tunnel! what other therapies might help beat this thing back?
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