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,
my dad is 76 and has been diagnosed with MG pending an EMG tomorrow. We’re not seeing much improvement yet with pyridostigmine. He’s experiencing pain from thighs, down through knees to calves. Most sites say there is no pain with MG. Have others experienced pain? If so, how did you manage it? Also, what has been your experience with pyridostigmine? Currently, he is in-patient and is getting 60 mg at 7 am, 1 pm, and 9 pm. Thank you for any advice that I can use to better advocate for my dad.
Welcome to the group!
Sorry to hear your father may have MG. The diagnosis of MG can be difficult -- blood tests, emg, and sometimes by symptoms.
I was diagnosed at age 65. Mestinon helped me. Usually you take a pill (60mg) and then in about 30 minutes you begin to be stronger. It lasts for about 3 -4 hours and then wears off. The effect is like an aspirin -- works for a short time.
To manage my MG (blood test was positive), I took about 6-8 Mestinon per day.
My symptoms are probably more typical -- feel reasonably normal until you try to do something and then tire very quickly. My pain was from trying to use muscles that didn't work very good, but not while resting.
My own symptoms started with double vision, then droopy eye lid and then chewing, talking problems and then overall weakness. That is the classic MG progression, however each of us is different.
There are many conditions that are somewhat similar to MG and so doctors have to do a lot of testing to try to figure out what is wrong and if it is MG. Mestinon does not work for everyone with MG, but does work for most of us.
MG, for me, was -- I sort of felt normal except for the eye problems that were always there (until treatment). However, when I knew something was wrong was when I tried to use my voluntary muscles -- they started OK, but almost immediately tired out and stopped me from doing things. As it progressed, I couldn't even walk very far -- muscles tired and breathing got very labored.
Why does the doctor think it is MG? What other symptoms than leg pain does he have? Has he had any other of the MG tests (i.e. blood)?. There are several types of MG or MG like conditions including ACHR+ mg, MuSK, LEMS, and I think some others too.
Pyridostigmine works right away with high enough dose. I was hospitalized when I first got MG for breathing problems. My Mestinon (what we usually call pyridostigine) was 3 pills a day, and to function I needed about twice that -- it wore off too soon between pills. At 60 mg every 3 -4 hours I was pretty good. But mine progressed and I had to take prednisone to stop my immune system from making the bad antibodies that attack the connection between muscles and nerves and cause the poor communication that causes our weakness.
Good Luck
Russ
He was misdiagnosed for quite a while and neurology was the last team to bring in for consult, and they suspected it right away. He doesn’t have the obvious droopy eyelid, but had some double vision and debilitating coughing and weakness.
Today he will have the EMG and hopefully more doses of the mestinon. Maybe going home is in his near future.
Question-
Do you feel miserable in the morning? Or did you reach a point when you started waking up feeling “normal”?
Do you feel miserable in the morning? Or did you reach a point when you started waking up feeling “normal”?
Almost definitely, the latter, most of us feel good for most of the time. The first few months can be grim, no point in hiding that bit of realism away. The period when the individual long-term medication is determined alongside bringing the MG under control can be challenging for some. But, there is light at the end of the tunnel and the majority of us have a near normal happy life, able to do most of the things we ever did. Maybe the odd lapse and in the grand scheme of things, nothing to worry about.