Originally Posted by Stellatum

Alice,

Thank you. Something in me already knew that, and it looks like it's time to dig it out and address it. I did think it was weird that two different doctors could get such different results on the same test. I think I've been thinking all this time that if one of those two doctors is right, it's more likely to be the one who diagnosed me, because he's a renowned expert with the most experience with MG. He says he's seen 300 MG patients in his career. I traveled from RI to Boston to see him.

My first two SFEMGs were performed by the same doctor. The first one came back "borderline" and the second came back "mildly abnormal." Then I was sent to the neuro with a special interest in MG, especially the ocular kind. He practices neurology, but also ophthalneurology. He did the SFEMG on my face, which was weird since I don't have any noticeable face/eye symptoms. He did a stimulated SFEMG (my first two were the normal kind). To him, the results were very clearly abnormal. He didn't even tabulate the information before declaring that.

But he also said one of the decisive factors in deciding that I should be treated for MG was that I have Graves' disease. In fact, my Graves' had been in remission for years, but I had a big relapse just a few of months before my first noticeable MG symptoms appeared.

My current neurologist has never wanted to do a muscle biopsy, even when I had no diagnosis. He said they yield false positives for all sorts of things.

My current neuro accepted the other neuro's diagnosis and has never questioned it. I think that's the right way to go. The evidence that I have an autoimmune myasthenic syndrome isn't 100%, but it's enough to proceed with treatment--and once that decision is made, there's no sense constantly questioning it...until the treatment has been given enough time to work and it's not working. Then is the time to bring up other possibilities. That time is approaching, but hasn't arrived yet.

I'm sort of thinking out loud here, but tell me if all this makes sense to you. The other element is the IVIg. My first course made a difference, but not enough of one that I was positive it wasn't the normal ups and downs of the disease. My second course made a dramatic difference. I had six weeks without noticeable symptoms (without IVIg, I haven't had a single day like that). That goes a long way in assuring me that suppressing my immune system is a reasonable thing to try, a reasonable risk to take.

There's one more factor here (sorry this is getting so long...). I had the first SFEMG early on. For the second one, I was on Mestinon. I stopped it 24 hours before the test, but I really believe that that isn't enough, and here's why: Mestinon gives me muscle twitches. When I stop taking it, it takes those twitches a week or more to go away--they subside slowly. So, for the third SFEMG I went off the Mestinon for ten days before the test. There's at least one study out there showing that Mestinon can mess with SFEMG results as long as a week after taking it.

Thanks so much for helping me think through this. I am not expecting myself to make an omniscient decision here. I just want to make the most reasonable ones I can given the information I have.

Thanks again.

Abby