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...
Hello, after EMG results showed a pre ganglionic loss of nerve signal to shoulder muscles and hand, I wondered if it were really MG and not just a spinal problem after an accident. Bloods were normal. However, recently walking has become hard, my neck muscles seem to have given up and am in constant upper back pain through trying to hold my head up. Hands are like useless flippers. Then I had a foot operation and guess what? Couldn't speak, swallow or even talk for 2 hours. On that basis my neuro is going to repeat all tests and then put me on mestinon anyway as life is just impossible for me. One thing I did think of though was whether I have the congenital form. As a teenager I was very weak and had the nickname 'Dormouse' as on a night out I would say, "Hi" then fall asleep. I seem to get a bit better when I was 19 and started to work out at the gym - sadly something that has become impossible for me now. As a child and young adult I would often wake up blue in the face and round the mouth which would startle my friends if we were out camping or similar. I have a very floppy elder son who is terribly disabled by a 'something'. Like me he has a weak, droopy face, partial ptosis and chronic tiredness. He does not have a crooked mouth but I do and that appeared in 2007. I have tried to post pictures but cannot seem to do this on the site. Connective tissues disorders run through my family as does hypothyroidism. I have neither of these but my kids and the younger members of our family have been. I do think though that especially growing up in the 70s even if you had problems, you were told just to get on with it, so I always dismissed my problems and tried to do exactly that until it has become impossible. My parents were not good advocates for us children, being more interested in their own issues rather than ours. Any ideas about the genetic thing?
I do think there is some genetic component to auto-immune diseases. Many folks (like me) have more than one. I have two additional auto-immune problems along with MG (although the MG is currently in remission).
My mother had an immune system problem that lasted from her 60s until death at 91 and had to take prednisone all of those years (polymyalgia rheumatica). Research on MG shows something like 5% have a close relative with MG, which is not very high, but higher than chance.
Hope you get things figured out. Having no diagnosis or a wrong one are both very difficult to deal with, harder than knowing exactly what is wrong. Sometimes I think those of us who get a quick MG diagnosis with the blood test are the "lucky" ones, as we begin treatment quickly and mostly the standard treatments work for us. The problem seems to be that there are some MG antibodies that are still not part of the testing available -- every few years a new test comes out that shows that. And of course there are other conditions that have symptoms that are similar to MG, but even rarer and harder to diagnose. And sometimes doctors seem to give up on folks who are hard to diagnose.
Sorry for your difficulties, and hope you find relief.
Good Luck
Russ