Quote:
Originally Posted by Stellatum
Beannie, I was surprised to read that you have not had a SFEMG. It's considered much more accurate for the diagnosis of MG than a regular EMG. Not every neurologist knows how to do one--you have to find a neuro who specializes in neuromuscular diseases.
SFEMG is the test for seronegative patients with symptoms that suggest myasthenia gravis. I hope you can have this test soon.
Also, you say the "regular antibody test" was negative, and that you're waiting on other tests. Are they testing for other MG antibodies? They should test you for MuSK antibodies and LEMS, too.
Abby
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I live in a major city and am going to a great medical center - that being said, they seem to be overly distressed that I have symptoms that don't fit together in a perfect neuro disease box. In addition to the weakness/fatigue, I have occasional fasciculations in my arms and legs as well as random muscle movement that I can't control. I also have sensory loss in my hands and feet (both temperature and pain).
I've been on the mestinon for 2 days and it really seems to help. However, it only seems to last for about 5-6 hours and it kills my stomach (does that improve with time?). I tried taking a Bentyl this afternoon to deal with the crazy cramping and it totally spaced me out. Of course, that was when the neuro called to talk! She wants to order the SFEMG and a lumbar puncture. The SFEMG to be done first. What is a SFEMG? How do they do it? I've had 3 EMG's already and two with the exercise/rest electrocute my hand and neck parts. Both times I had some positive results but they decided it was due to movement and not a real decrement.
I was tested for MuSK, but not for LEMS. It's only been a week and apparently it can take up to 2 weeks for it to come back. I get the sense from the docs I've seen that they NEED a positive test to help them know what to think. On the other hand, I am grateful for every negative test I get