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 visit to Shands was moved up when I began shuffling to walk and looking for walkers after I overdid it for a couple days. He repeated an EMG (that the insurance did not want to approve) and said he saw slight decrements in my legs, but not enough to make a firm diagnosis.By the way, I was freezing in that room! He sent me for more bloodwork for antibodies to tell you the truth, I haven't even asked what the result was because the last set was negative. He would like me to follow up with him in February and call if I become short of breath and admit me and start more aggressive treatment. He also wanted pulmonary function test and for me to follow up with Mayo for a SFEMG. I had my pulmonary function test back home last week and my primary sent me to a pulmonologist. He said my PFT showed evidence of diaphragm weakness and is going to start me on BIPAP. I have had 5 blood gases since August that show respiratory alkalosis that he said was due to my lung muscles having to work to hard. So no firm diagnosis, but I feel I got a little closer. I hope.
Mestinon (pyridostigmine) seems to be quite useful in determining if you have MG or not. It seems to improve most MG folks and doesn't do much of anything good for anyone else. I would see if your doctor could do a sort of controlled test of whether it works or not to improve your condition.
-- first take a very low does -- 20 mg or less to make sure you aren't allerigic or hyperreactive to it.
-- if not, then take 60 mg and see if anything happens (of course remembering that there is a 30% placebo effect with almost any thing a person takes they think will help them)
-- if it helps, then that sure makes it look more like MG; if not, then maybe a 90 mg dose could be tried just to make sure.
Since mestinon does not always work for MG, it isn't a perfect test, but it does seem quite useful. Remember, mestinon does have its own bothersome (but short lived) side effects. Mestinon also gets into your body in less than an hour and gives the effects and then gets back out within 6 hours, so is a quick to know if it is going to work vs many drugs which take weeks to know.
My sister-in-law could have been diagnosed with Parkinsons by a positive response to the medication Sinemet instead she had nearly a dozen appointments, scans, visits etc. until a doctor finally said, "it might be parkinsons--so let's try Sinemet" which did work quite well and then she got the diagnosis based on the medication working. . Doctors like to play with all the wonderful toys and tests which are not always the quickest way to a diagnosis, but do help pay for their practice.