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...
My dad was recently diagnosed with MG and when they did the ultrasound on his kidney to see if he could take the medication, they found a tumor on his kidney. The tumor is very slow growing and they say the operation is very simple, but they are concerned about the MG. His neurologist had him up to 3 pills of Mestonon a day but he was still slurring his speech so she increased it to 4. Now he is getting extreme cramps, making so much saliva he is almost choking on it and having trouble sleeping. The problem is now his neurologist is on vacation. She wants him to she a rheumatologist at Cleveland Clinic before the surgery and with 21 doctors they say the first appointment would be in May. We try to get ahold of any doctor and just keep getting machines to leave messages and they will call back. Dad went out for dinner on his anniversary and almost choked. We could not get a hold of any doctor. They tell him to go the the ER. He has 4 doctors in his care and they want him to go to the ER. We took it upon ourselves to decrease the Mestonon to 3 pills because of the extreme side affects. It would be nice if he could get ANY one to help him!
Flutebell
If you go to an ER, don't just got to any ER, but go to the Cleveland Clinic one where there will actually be doctors experienced with MG to get the treatment right and get your foot in the door for long term treatment with a neurologist there (or whichever is the biggest smartest ER in your area--for me it is Mayo Clinic-Rochester MN).
There are not many MDs who actually know much about MG, and so you really need to get an expert who treats MG patients to be successful. My own experience is a large integrated institution (i.e. Cleveland Clinic, Mayo, University system...) makes it easy as my family doctor is part of the same institution as my MG neuro, and they actually talk to each other about me.
Mestinon is very helpful. I had to take Imodium in the morning with my first Mestinon pills. I also took them about a half hour before each meal so I could chew and swallow better as they took effect.
The side effects are worse, I think, at the start of mestinon and I do think we get adjusted to the pills.
My strategy was to always take mestinon with something to eat -- usually a granola bar. A little food helped me with the stomach cramps and the Imodium (loperimide) was very helpful with just the morning dose.
I also didn't take mestinon at night as I got bad foot cramps with it. Mestinon is sort of like aspirin, you have to take it "as needed" up to some maximum dose. I tried different amounts and found that 30 (half pill) every 2 hours was good much of the time and seemed to give me less side effects. My maximum allowed was about 120 every 4-6 hours, but couldn't handle that much.
Mestinon is a lot like taking aspirins for cancer -- makes you feel better, but doesn't actually treat the cause of MG -- immune system churning out bad antibodies. To treat that you have to suppress the immune system--and an MG experienced neurologist will work with you to begin that treatment ( a few folks have mild MG and can get by with just mestinon).
Good Luck
Russ
http://www.mayoclinic.org/patient-visitor-guide/minnesota/appointments/faq