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Myasthenia Gravis

Why am I not getting any help

08/04/2009

Question:

I have all symptoms of MG except double vision, I do get blurry vision. I have muscle weakness arms and legs, trouble holding head up, breathing and swallowing problems. I have lost 14lbs in weight and cannot do anything. My husband has had to abondon his work to care for me full time. I was in hospital for a week having tests which all came back negative and neurologist has passed me over to a general medical specialist who I am still waiting to get an appointment to see. I have been ill for over 3 months, dangerously ill for a fortnight - neurologist thought I wouldn`t make it. As it seems to be quite common to have negative tests and still have MG, and it seems most people are put on mestinon to help them even with negative tests, I don`t understand why I am getting no help at all. Could my GP prescribe Mestinon? I don`t how much longer I will have to wait to get help from someone.

Answer:

I would seek another opinion from a neurologist who is very experienced with MG, rather than having a GP inexperienced with the disease starting treatments. If your symptoms are debilitating and due to MG, there should be strong supportive evidence even if the serology is negative. It is worthwhile working hard to get a solid diagnosis. This is the foundation of a reliable care plan. Hope this helps in the long term.

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Response by:

John G Quinlan, MD John G Quinlan, MD
Professor of Neurology
College of Medicine
University of Cincinnati