Myasthenia Gravis Community Group
Pretty simple: I would love to engage/communicate with those dealing with the daily struggle of having Myasthenia Gravis. My world as I knew it, no longer existed when I was diagnosed with MG in 2013 ( it took a year to get diagnosed). Sometimes, I feel like no one truly understands this limiting, unpredictable chronic autoimmune disease.
seeing specialist Tuesday from docs referral for possible MG. The symptom I went with was spontaneous monocular ptosis. Question is can MG bring on a spontaneous effect. Went to bed fine woke up in morning with ptotic left eye.
Welcome to the group
My MG onset was double vision. I was mowing the lawn one day and suddenly my eyes wouldn't coordinate together and I had the double vision. It was better in the morning and worse by afternoon every day after that
Then I noticed one eyelid wouldn't stay open some of the time. So as I had eye troubles, I went to an eye specialist. He put an icepack on my eyelids for about 2 minutes and the ptosis went away for a few minutes He told me that he was 85% sure I had MG based on the icepack test.
A blood test confirmed it. I went from double vision to ptosis in about 2 weeks and within 4 weeks was having trouble chewing, talking, breathing and using my fingers and hands and in about 6 weeks was in the hospital with breathing trouble.
Some folks never have more than the eye problems (ocular MG).
The icepack test you can do yourself. Another check is if you take a medicine, pyridostigmine (Mestinon), and your eye stays open for a few hours, you probably have MG. Of course there are blood tests, electrical tests and others too.
If you do have MG, getting treatment quickly is important as some of us get worse rapidly. However, with treatment, most of us do quite well. Treatment takes a while to work.
Good Luck
Russ