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...
This may be kind of long, but I've been dealing with weird symptoms for about 16 years. It stated when I was 18 and went through a period of time where I couldn't hold my arms above my head long enough to put my hair in a ponytail. Being 18, I ignored it and about I month or so later my arms worked normal again.
Mainly, the issues that have plagued me for the past 16 years are weakness in my facial muscles. I can't hold a smile for more than a few seconds. Double vision seems to come only when I'm really stressed out.
Recently, I've noticed my arms starting to get weak with certain motions or repetitive actions. I figured it was time to talk to a doctor. I got the referral and saw a neurologist last week. I'm highly unimpressed with him. He laughed at me for most of the 10 minutes he was in the room with me. Couldn't seem to believe i waited so long to get medical intervention.
He didn't ask me many questions or tell me what the steps would be. He prescribed me mestonin without any testing or definitive diagnosis. I'm very hesitant to medicate.
Once the doc left, the nurse brought me some paperwork with a long list of tests to get completed before my next appt in 3 months. He wants me to get an MRI of my head and an eeg. Neither of which seem to be the proper diagnostic tests for MG.
Aside from that, he's also doing tons of blood work. Many looking for MG markers in the blood. But also, a 5 hour glucose test and checking my a1c. I am not diabetic. I can't wrap my head around why he's doing these things.
I guess I'm just looking for any advice that can be offered. Thanks!
Everyone seems to have a different set of problems. I started off (2 years ago at age 70) with weakness from my hands down to the my feet (over time) and after 4 months of suffering and blood tests that were all okay, he finally put me on Mestinon and Prednisone and it helped greatly. I got down to a low dose of Prednisone and tried to go off of it and got a bout of double vision that lasted for a month. Went back on the Prednisone, worked It up to 40 mg and it went away. Was fine, tapered down to 2.5/5 mg and then 3 months ago, started seeing some changes that were totally different from what I had before. Now I am up to 40/50 mg of Prednisone and Mesitnon and don't really see the results like I did before. I can function, but I just feel off. I was very active before and now I don't feel I can do what I was doing before.
I would give the Mestinon a try. Like you, I was very hesitant, but this is something you can't seem to fool with and have to go the medication route it seems. I found that out the hard way.
I took my first 60mg dose of Mestonin this morning. It made me feel groggy and light headed.
Maybe I'm living in a fantasy world where my symptoms won't get worse. But after 16 years, I guess I find it hard to believe that they will become unmanageable. I guess I expected answers and some discussion before any treatment. And a doctor who would communicate with me as i would really like to be part of my care.
Sorry you have been stricken with MG, but at least you know what you are dealing with. Doing research is a wonderful thing and you may be more educated than you doctor as not all neuro's are MG specialists. You must communicate with the doctors and tell them exactly what you are experiencing. That is the only way to help them adjust the meds. Sorry to say it may get worse before it gets better, but it will get better. Keep in touch with us and let us know how you are doing. Many of us have had some rough days but are now better and adjusting to a different world than we once new. Yes, MG will change your world but it is ok and you can survive in today's world with MG.