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Old 04-11-2011, 08:26 AM
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
15 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
15 yr Member
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Hi. I'm really not sure whether to answer this, with my half-knowledge, or whether it would be better not to say anything at all. But with that caveat, let me say: I think you need to find a neurologist who specializes in MG.

I have heard of many cases in which people who test negative for the antibodies at first test positive later. I don't know if it can go the other way, too, but I don't see why not. Have you had a single-fiber EMG? That's the test they do when they're not sure of your diagnosis. Many of us here, including me, have been diagnosed with MG even though we have negative antibodies (I have tested negative three times). We are diagnosed on the basis of the SFEMG, or just on symptoms.

I have never had ptosis. As for the muscle testing they do in the office--well, I think that depends how it's done. Two of my neuros could never get that to show anything with me, but the third made me sustain the pushing until the muscle gave out. I myself was surprised to see it give out--I hadn't noticed any weakness in it.

As for the "MG is never intermittant" thing--I'm very doubtful about that. All of us here will tell you we have good spells and bad spells. For the first year, I had weeks at a time when I had hardly any symptoms. Even now, I have "much better" and "much worse" days, and a spell of either can last a week or even two. As for the trouble swallowing: your neuro needs to meet me. I have no trouble swallowing most of the time, but if my symptoms are getting bad, then I start having trouble swallowing.

I'm afraid I have the impression that the neuro who said all of this doesn't have a lot of experience with MG. He seems to know about "textbook cases," but very few of us are textbook cases. Your local chapter of the Muscular Dystrophy Association can give you the name of the doctor in your area who specializes in MG, but you may have to travel. I live in Rhode Island, but I got finally diagnosed by a doctor in Boston. My local neuro specializes in neuromuscular diseases, so he's the best local guy for MG: but when my antibodies kept coming back negative, and my symptoms were so atypical, he sent me to a neuro in Boston who has seen 800 patients with MG.

At the very least, you should have the SFEMG!

I'm so sorry you're going through this uncertainty, which is just brutal.

Abby
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