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

Martha, A friend of mine got a blood clot after doing IVIG. It turned out that she had antiphospholipid antibody syndrome. It's a clotting disorder quite common in people with autoimmune diseases. Did they check you for that? The "funny" thing is that IVIG will help that problem, since it is an autoimmune disease.

Do they have you on blood thinners? I would really recommend getting a referral to a hematologist to figure out if you have any clotting disorders.

I am so sorry you guys are having such a hard time finding the right combo of treatments for MG. It's so frustrating that I hardly know what to say. Please be careful with the taking of "vitamins." Adding only one at a time is always best in case you have any kind of reaction. And I can't say enough that you should always check with both your doctor and your pharmacy about potential drug interactions.

I know that the worst part about MG is giving up your old life. I had to do that too and it stinks. I miss working every day. I think "rethinking" your life is essential and realizing that "you are not WHAT you do!" I hate when people say that "fat and ugly" BS, Erin, it makes me so sad. Why people have to be so cruel. It is a struggle every day just to survive and every single one of you deserves a huge pat on the back and TONS of support.

Annie