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...
Hi all, I have an appointment with a neuro-ophthalmologist in a couple of weeks and he'll be testing for MG, and wanted to know if any of you have these issues. I was diagnosed with Strabismus at age 46 (double vision, right eye rolls up and to the left), although one doctor thinks it Fourth Nerve Palsy. I didn't have it when I was younger, and I didn't have any injuries. Around the same time, I started having swallowing issues. Not only is it hard to initiate a swallow, but I get tired chewing, so I eventually give up. It's really hard for me to drink liquids. Both my double vision and my swallowing get worse as the day progresses. I have other autoimmune diseases, so I thought perhaps I might have MG. I was tested via a blood test and it came back negative, but I know that there are other tests that can be done. Thank you for any related feedback/experiences you can share! ADT
I suggest you have your doctor let you try a 60 mg mestinon (pyridostigmine) pill. If that makes you feel much better in 40 minutes and lasts for a few hours, it is pretty likely you have MG.
My first symptoms were double vision and then chewing problems, talking problems too
After blood tests, the next test for MG is a special kind of emg type test. If you have MG it most likely will pick it up.
MG is difficult to diagnose; rare, and most of the time we have delayed diagnosis due to doctors not taking it seriously. BE PERSISTENT!!!!!
Good Luck
Russ
My only real symptom is double vision (see my post from 1/23).
I also have another auto immune disorder (psoriasis).
It took 2 years for me to be diagnosed and I was also told by one neuro ophthalmologist that I had a 4th nerve palsey. He was wrong.
I tested negative via blood tests and repetitive nerve stimulation (rns) . I tested positive via single fiber electromyography (sfemg). SFEMG is the "gold standard of testing" according to my neuro ophthalmologist. Not many doctors are trained in doing these studies but if you can find a neuromuscular specialist near you who performs the test, I say do it. Both of the tests are uncomfortable to painful, depending on your level of tolerance.
Mestinon does not usually work for double vision. It did not work for me.
This disorder is rare, there is not a lot of research and I found that all of the neuro ophthalmologists I met with (six of them) follow a very rote course of action as there is not much out there treatment wise.
That said, be your own advocate or have someone speak up for you if you can't.
Doctors aren't always right.
Work has to make assistance available if you need it.
Friends and family are happy to help.
And there are plenty of us out here living with the disorder that you can run things by.
I wish you the best!