Quote:
Originally Posted by Poetist
Stella,
You just posted my experience. I haven't dropped my doctor just yet, because next month, he is ordering up another round of MRIs. I guess to look at the large tissue on my thymus.
But I must ask why do you think you might have MG?
|
I don't want to drop my doctor, because he's the guy all the other neurologists send their patients to confirm an MG diagnosis before starting treatment. That's how I ended up with him!
I think I have MG because I have fatiguable muscle weakness in my legs, arms, and neck, and especially in my sides and lower back. It comes and goes, is better in the morning and worse in the early evening. My MRIs are normal, and the serum CK test (that shows muscle break-down) is normal. Also, I have Graves' Disease (another autoimmune disease), and I first came down with the MG symptoms after two weeks of taking care of five kids with H1N1--which I never got myself (none of us were immunized--it was before the shots were available). My suspicion is that my immune system over-reacted while fighting off the flu.
I also have a little eye involvement, but it's mild.
Tell me, please, what are your symptoms? Why do you think you have (or might have) MG? I assume your antibodies test was negative. I had two SFEMGs. The first came back borderline, the second mildly abnormal, but my doctor doesn't think they're enough to diagnose me. I say it's because he only tested muscles that at the time were very mildly weak. Now my arms are getting weaker, so I hope for a third SFEMG--and this time, I'm taking myself off the Mestinon for three weeks first! I don't believe this "12-hour" thing. I have quit Mestinon before, and it's three weeks off it before I stop twitching--a side-effect of the Mestinon. So while I know it has a short half-life, I believe that there is some sort of strong residual effect that my doctor doesn't acknowledge, and that may be messing up the test. There is a small study that shows this effect up to two weeks, but my doctor evidently doesn't know about it, or doesn't take it seriously.
Abby