Get a Second Opinion
I’m seeing each Doc has a “pet” approach, none seem to be fully informed?
I’m a CIDP patient- Diagnosed in September, I was haing trouble walking, dressing, standing, turning wrenches, door knobs, etc. After the EMG nerve study, and LP.
Doc started w 60 Mg Prendisone, it worked aral well, at first, but two months later started to break down again, Anyway, I’m on second moths IVIG after my initial 5 day load, I t is not working!!
Doc is stuck on IVIG and Prendisone, and talking Imuran and saying I ask too many questions?
ANYWAY, I’mfinding, like you, the more I exert, theweaker I get, so, very moderate exercise, friend, if at all. And search out a Better GBS Doc, ask around, here, or w other sufferers that have had success?
I’m new to all this, so forgive my not “posting a thread” or whatever? But, may I ask? IF I TRY TO “DO” TWO DAYS AND AM STRETCHED OUT FORV TWO, WHAT DO I DO TO GET MY STRENGTH UP?
IS ANY EXCRCISE GOOD? LIKE MY FRIEND HERE< I FIGURE THE LESS I DO< THE MORE ATROPHY? WHOW DOES ONE BALANCE? noun intended. Sorry if I "stompd on a thread" I feel the author's frustration, I'm with you, friend, but don't overdo (whatever that means;-) Eric
Get a second opinion
I agree with all the posts that say it’s crazy to delay until December to see him. Especially since he didn’t see any improvement at all!
I’m much much better but still can’t get my neuro to let me get off 5 mg every other day — when you feed your body steroids, it stops making them and so I’ve been told it’s unlikely I’ll get off this minimal dose – EVER.
I’m so sorry for the tough time you’re having — I understand about the steroid rant — used to have the rants when I was much higher doses.
Please, find a second opinion — this disease is NOT improved with physical therapy.