Quote:
Originally Posted by blondieslp
I was tested a few times too. I wish something concrete would show up but I know how I feel. For a while, I really tried to convince myself it was in my head because I thought maybe that the Neuro thought it could be but I KNOW it is not.
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Boy, is that ever familiar! Until I actually got a firm diagnosis, I can't tell you how many times I found myself thinking, "Maybe I'm exaggerating this...maybe it's all in my head..." Then I would have some severe episode and end up on the floor, and realize I was undeniably sick. Then I would get a little better and start doubting myself again. MG does that to your head, especially since (with me, anyway) it's such an off-and-on thing.
Quote:
Originally Posted by blondieslp
The EMG I had was a waste of time and money because they didn't test the muscles where I feel the most weakness.
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Yes, that's exactly what I thought with my first two single-fiber EMGs. They tested my arms and legs, when my biggest weakness was in the side muscles. But weirdly, my third SFEMG was with a neuro who specialized in ocular MG. I have almost no eye symptoms but he insisted on testing the muscles around my eyes anyway. And that's what got me diagnosed. Evidently he could see something on the EMG that wasn't causing me symptoms.
Quote:
Originally Posted by blondieslp
IVIG would not be an option because I do not want any type of blood product from someone else.
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If your reasons are religious, I won't argue. Even if it's just a matter of risk, I understand that, too, especially because one course of IVIG contains antibodies from thousands of donors. My neuro said the reason it's so expensive is that such extensive testing for viruses is done. Still, I do understand such concerns. You might consider plasmapheresis, though! That doesn't, or doesn't always, use blood products from donors. And yes, the effect is only temporary. Some people on this list have it every six weeks. A visiting nurse comes to their house, or they go to an infusion center.
Quote:
Originally Posted by blondieslp
I am curious about the Imuran. Did you try Prednisone or is the Imuran a better choice?
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I chose Imuran because my MG isn't severe or dangerous (I have no breathing problems). My understanding is that Prednisone is a lot stronger and works a lot faster than Imuran. But everyone I know on Prednisone is dying to get off of it because of the side effects. So I decided I would rather wait for the Imuran to start working, which can take a year, and even take the chance that it won't work at all, rather than go on Prednisone. Like I say, there are some people who don't have this luxury of waiting--I am not that sick, and I have the help I need to get done what needs to be done. Some people are so sick that the side-effects of Prednisone are worth it.
Abby