Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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New Musk-MG Dx

.momof2
.momof2

In July I started experiencing nightime ptosis in one eye. After seeing my ophthalmologist I was referred to neuro for further testing that showed positive anti-musk antibodies. I went for a second opinion and the other neurologist repeated the lab work and sent it to the Mayo Clinic. The result came back positive again, however it was a low positive.  I had a single fiber EMG- results came back normal. 
Has anyone had a positive antibody and a normal SFEMG? 

My new neurologist contacted me shortly after to tell me that the Mayo Clinic has recalled my positive result for the musk antibody, saying that there is a problem with their reagent and they are not doing that test for the time being until the issue is resolved. My neurologist now feels that I don't have MG, however I still have the inability to open one eye sometimes at night and get leg heaviness during the day when I'm stressed. I'm going back again in May and will ask to have my musk antibodies checked. Any suggestions?    

InvisableMan
InvisableMan
MoMof2, Has your neurologist done ACHr (Acytecoline Receptor) blood tests? These tests only are effective to confirm MG in about 70% to 80% of MG cases as I understand. I hope this will help. It is very frustrating when you keep having symptoms and con not confirm the cause. Hang in there. In my case EMG and antibody studies were fruitless in my case.
Rhanson
Rhanson
Hi momof 2
Welcome to the group.
You can try the test yourself that was my first diagnosis from my eye doctor who I went to see with double vision and a drooping eyelid.
The ice-pack test. Put an icepack on your eyes for about 2 minutes and if the eyelid drooping goes away after for a few minutes, it is likely MG. The eye-specialist said it was 85% accurate.

Good Luck
Russ
.momof2
.momof2
Thank you both
I did have my Acytecoline antibodies checked which were negative. I will try the ice pack test thank you.
Be well!
Jeanine
Speechie
Speechie
I would suggest revisiting issues with Neuro before May. You may be seronegative and still have MG. My doc basically said to come back in 6 months. When I pressed, he did a mestinon trial (which is used only to treat MG). When mestinon noticeably relieved all my symptoms, he felt certain that MG was the right diagnosis. LOL, I still had to redo all the original tests and more but results were unchanged. That was a couple decades ago.