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Wednesday, June 28, 2017
Progression of MG
I was recently diagnosed with ocular MG. (I also have Graves disease which I was treated for 5 years ago with radioactive medication.) My primary symptom was a droopy left eyelid. The doctor also said that I had tension in my neck that was probably caused by trauma from a breathing tube being inserted during a major surgery I had a month prior. (The eyelid problem started shortly after surgery.) He prescribed muscle relaxers to help me sleep. Is this even a drug I should be taking? When I asked him if this disease could progress to the point of affecting other muscles in my body, his response was "Your body did not start producing these antibodies overnight. It`s probably been going on for 20 years. If you were going to have problems somewhere else it would have already shown up." However, I have noticed just in the two weeks since I saw him that my arms, back and the muscles in my chest-neck area near my collarbone are usually aching pretty badly be the end of the night. The muscles in my shoulders and back of my neck are always tight and in constant knots. Could the tension in my neck and the other aching muscles be caused from the disease progressing to the generalized form? And do you think I should find another doctor? It`s a little scary when you seem to know more about a disease than the neurologist, and I don`t know that much! Any advice or help would be greatly appreciated!
I think a second opinion is often a good idea. I would recommend that you see a neurologist who works at a regional Muscular Dystrophy Association (MDA) clinic. The doctors have a lot of experience caring for patients with MG.
You can find the closest MDA clinic by checking the web page (mdausa.org) and clicking on "clinics". They should be able to evaluate you and answer your specific questions.
John G Quinlan, MD
Professor of Neurology
College of Medicine
University of Cincinnati