Thread: Another Crisis
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Old 08-19-2009, 12:25 AM
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Nicknerd Nicknerd is offline
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Join Date: May 2009
Location: Toronto, Canada
Posts: 547
15 yr Member
Nicknerd Nicknerd is offline
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Nicknerd's Avatar
 
Join Date: May 2009
Location: Toronto, Canada
Posts: 547
15 yr Member
Default Hey Martha

I know what you mean....My MG is really refractory right now...I've had to go to the hospital 3-times in the last month since my thymectomy because it's been so bad...It just seems to be getting worse...I started taking prednisone a couple of weeks ago...I had 5-plasma exchanges during the first week of taking the pred. and am hoping that my MG is bad because the prednisone hasn't kicked in yet...

Does anyone know how long it takes for the prednisone to start to work? I've read and heard that the prednisone can temporarilly make MG worse, which it certainly has for me...It's also opened the floodgate to infections but unfortunately, no MG-symptom relief...

I spoke with a speech pathologist today who came to my home...I broke down crying because I've realized how limited my life has become. I haven't worked in almost 4-months, I've stopped socializing because I can't talk or make facial expressions half the time, it takes me a century to eat a sandwich...When I go to tell a joke, and get to the punchline, I gotta say, "I'll tell ya later," because I've completely lost the ability to talk...when later comes, it's all outta context and not funny! My joi de vivre is leaving me... This disease effing sucks...Sorry about the swearing.

Anyway, I know how you feel, Martha...I want my life back too! I will definately pray for you...Hopefully, they will find the right combo. of something to help out with the symptoms....I just bought a crap-load of vitamins which I plan on taking everyday....I hate feeling so helpless..

Nicky
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