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 am very new to this. I have struggled off and on for quite some time with muscle weakness and fatigued feeling. Recently over the past 2 months or so the weakened muscles and fatigued feeling has gotten worse. I went to the ED a few times thinking maybe my iron was low but it was fine, finally the last time I was there I was so weak and my speech was slurred or weird and my walking was very unsteady. I was admitted. I had seen a neurologist who after evaluating me suspected Myasthenia Gravis. I have had lab work done and an EMG as well as RNS of course all came back fine. While awaiting the results I had been started on Mestinon which seemed to really help, when I went back to my full schedule of working and taking care of my kids the mestinon dose didn’t last as long. I also suffer from drooping eye lids, especially my right one. My voice changes up on me a lot and it had for quite some time but I didn’t know it was a symptom until recently. Anyway my results had all come back normal so the neurologist had me begin to taper off of the mestinon and I am a mess. She said she is not sure if I have MG because of the normal test results and now she wants me to see a neuromuscular specialist. In the meantime I am out of work, my arms are super weak, and my legs are like jelly. My voice consistently sounds hoarse or it becomes hard to speak and I am exhausted . Has this ever happened to anyone else? Could it be MG.
Yes, the symptoms you have are certainly similar to ones that occur with MG. Responding positively to mestinon also is unlikely to happen in other conditions. The first test that I had that told the eye doctor I likely had MG was the "icepack test." He had me hold an icepack to my eyes when one of them was drooping badly -- maybe 2 minutes or so, and then, as my eye lid no longer drooped for a few minutes, he said he was 85% sure I had MG. Mine was confirmed by the blood test. You can try the icepack test on your droopy eye to see what it does for yourself.
I am not sure I understood you -- mestinon worked good at first and then didn't work after a while? Mestinon takes about 30 minutes to take effect and lasts for about 3-4 hours and then wears off. Mestinon works if we are in early to mid stages of MG, for most folks, but not all, and at some point far along it may not help as the disease has progressed too far and we need something else to stop the immune system from attacking our muscle receptors.
By the way, you don't need to taper on or taper off mestinon -- it is like aspirin where most of take it "as needed" up to maybe 8 60mg pills a day (my max dose). You can tell if it is working with each pill, just take it and see if in 30 -60 minutes you feel better. Most of us take 60 at a time, but may take 90 or 120mg. I took about 60 every 4 hours or maybe 3 hours if I needed it while I was waiting for prednisone to stop the problem of an immune system churning out bad antibodies.
Your neurologist will be very interested in what you tell them about mestinon's effect. Almost nothing else responds to mestinon other than MG and so if it clearly and immediately (30 minutes) makes you feel better, then MG is likely.
I try not to second guess my doctors, but track my symptoms carefully trying to look for patterns and to have them organized for efficiently telling the doctor. And I am not at all backwards about expressing how I am doing, and asking the doctor the questions I want to know answers to. My question would be (if this is your case) Why are you taking me off medicine that works to make me more functional? What does it mean to you that mestinon makes me more functional? etc.
Good Luck
Russ