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
I'm a newly refurbished person in one respect as I have overcome a pretty severe alcohol addiction. I'm 5 years sober and went through the mill with what it all entails being an alcoholic, including pancreatitis twice and I was resuscitated etc etc. I'm writing an autobiography on it all. About 4 years ago I had a seizure, since then I've had another four but epilepsy has been ruled out because I've had 9 million EEG and MRI's and sonars and so on (I'm surprised NASA hasn't tested me for something from outer space yet). I take 1000mg of epilum just in case, along with seroquel 200mg at night and 3omg of Pax- 10 (basically valium) a day. So all is good until a little while ago I started to feel really fatigued and odd. Double vision in my left eye and my eyelid dropped all of a sudden. So I went to the optometrist and then got sent to my old friend Mr Neurologist who did more tests on me then mice get in a laboratory. So it turns out I have myasthenia gravis. Obviously it's not ideal for anyone to get, but I'm 33 and a male and I'm finding it difficult to find out if there are more males with it because apparently mostly women and people over 50 or 60 get it. So I am on Mestinon now too. You could probably get high off of my blood. Dr Google is definitely not my friend so I thought I'd join this forum instead and get advise from people who have actually heard of myasthenia gravis. I know what to expect but there is no replacement for experience. Thank you
I am one of those men who got it old (65). I think that is easier, as I have already lived much of my most active life healthy and could accept this a little better.
If you have questions on MG and treatment, ask! Many of us have had success with our treatments and are doing well with MG. Personally, mine is in remission so I don't have symptoms and don't have to take medicine, although it is likely to come back again.
Generally we all start on Mestinon, and if, as it does for most of us, MG progresses, we have to take some kind of treatment to cut the immune system from making bad antibodies. Watch your symptoms very carefully, and if you think you are getting worse, make sure you contact your neurologist. I went from some eye drooping and double vision to in the hospital from breathing difficulties in a few weeks.
Congratulations on being sober for 5 years.
Good Luck, Russ