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...
New Years day I began to have slight double vision. I went to the ophthalmologist that Tuesday and he gave me a through exam with dilation. He thought it was just eye strain from the video games the 2 days leading up to it. Fast forward 10 weeks (had 2 follow ups and he still wasn't concerned) the DV had gotten worse and I developed eyelid drooping on the right side before my next visit. I had done a lot of research and MG kept appearing so I brought this up to him. "Luckily" the lid droop happened when I was in his office.
He put some ice on my eye and the lid popped up like I had a botox injection. So, here I am. Can not get into Neuro until May. Eye doc gave me a script for Mestinon sort of a diagnostic. I have not had the droopy eyelid since I started it this past Saturday but the DV persists (guess that's normal?). Blood work so far has been negative. Based on the ice pack and positive help from the med, looks like I have ocular MG with no other symptoms. Today is a bad day eye wise and I called into work. Found this place and dropped in.
He put some ice on my eye and the lid popped up like I had a botox injection. So, here I am. Can not get into Neuro until May. Eye doc gave me a script for Mestinon sort of a diagnostic. I have not had the droopy eyelid since I started it this past Saturday but the DV persists (guess that's normal?). Blood work so far has been negative. Based on the ice pack and positive help from the med, looks like I have ocular MG with no other symptoms. Today is a bad day eye wise and I called into work. Found this place and dropped in.
Be extremely cautious -- don't exert yourself, don't get in a hot tub or do anything to aggravate the MG. Do a breath count (exhale and count as many numbers as you can out loud before you run out --if you can only go up to 12 or 14 you are in trouble). this will tell you where you are at with the MG.
Opthamologists are eye doctors, and don't have anything to do with treating MG -- I saw one for far too long when I first got sick. They don't like to give up patients!
The Neuro will put you on steroids and azathioprine (or cellcept) and this will get your immune system in check. But for some reason you will have to wait a mighty long time for that -- to live with double vision for that long is a terrible thing -- see if you can get an appointment sooner.
If you feel really bad, call 911 and go to the ER. You need to advocate for yourself -- this is a hard disease with a good treatment and outcome, but it is perilous! The first few weeks are the worst. The blood test (for antibodies) doesn't always come out positive for MG -- about 20 % of the time it doesn't.
If you are too weak to do a lot of the legwork for this disease, get somebody (preferably a mean old S.O.B.) to advocate for you. If you don't have a good neuro in your corner yet, this is the next best thing.
A good neuro will recognize how serious this disease is -- and won't make you wait 2 months! Good luck. ~joe
With about 90 mg of mestinon, my double vision would almost go away for about an hour, but never totally and always come back soon. I had to take prednisone for several months to get rid of it.
You should read the myasthenia gravis organization web page and other reputable websites to find out as much as you can about the symptoms and progression as most of us start like you did and move into general MG soon (not everyone though).
If MG progresses, you can have trouble breathing if you do anything strenuous, and that makes one panic and things get worse. We go to the ER sooner rather than later and tell them we have MG. My first hospitalization was early on when I was told to take a modest amount of mestinon, and really needed much more (about 60 mg every 2-3 hours to function at more than sitting still).
Good Luck
Russ