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Saturday, March 25, 2017
Involuntary muscle movements
I was just diagnosed 6 month ago with MG. I started taking a low dose of Mestinon. My symptoms were very mild. I was diagnosed accidently by a neuro-optomologist during an eye exam. I was seeing a neruologist for incontinence problems and informed my neurologist that I had MG. He did not want to believe I had MG, he had not recieved the test results. Then my symptoms escalated. I walked into his office wearing a neck brace and hand-carried the test results from the eye doctor. He put me in the hospital and I recieved my first IV infusion, which worked wonders. My most acute problem at the start was the neck weakness, which you do not hear a lot about. Then 8 weeks later I experienced my first generalized weakness of arms, legs, difficulty swallowing, shortness of breath and trouble speaking because of muscle weakness. I was taken to the hospital and admitted. The doctors at the hospital put me on 40mg of predisone. After 2 weeks off work and lots of rest I am doing OK.
Now, my most extreme problems are my 25lb. weight gain and involuntary muscle movements usually at night, but sometimes during the day. The movements are in my legs and sometimes all over my body on my face and eyelids. I also experience bad leg cramping at night. All this seems to be related to over activity during the day. I also have day and night sweats. My Dr. says all this could be medication related. So I am now on just 20mg of predisone going down to 10 or none. My Dr. said I can just stop the eye medication or use as needed. He seems to be puzzled about the leg cramps, muscle movements and some sort of abnormal reflexes on my feet. My toes on both feet turn up when tested. He plans on future treatment with the IVIG, for the MG as needed and more tests. I just assumed the muscle movements were part of the diagnosis. Do you agree?
I must say I am not sure about your case. I would suggest that you see a neurologist who takes care of quite a few patients with MG. The easiest way to locate such a physician is to find a nearby Muscular Dystrophy Association clinic. Check on the web at mdausa.org. On the home page, you will see a place to "find a clinic". Since MG is a MDA covered diagnosis, you will be seeing a neurologist who is more experienced than most at evaluating, diagnosing and treating MG. I hope that this helps.
John G Quinlan, MD
Professor of Neurology
College of Medicine
University of Cincinnati