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Wednesday, September 28, 2016
Treatment options for myastenia gravis crisis
please help me i am a 38year old female with myasthenia gravis and was diagnosed in 1986 at 16yrs old. my question is, what treatment if ANY, are available after thymectomy,ivig therapy and plasmapheresis? in summary ive lost 30lbs in a month or less due to trouble swallowing. had ivig then bedrest for 45days,then plasmapheresis twice (every other day for 5 days)spaced by about 7days. ive been home for 5days and within 2hrs. of medicating im still having trouble swallowing!i feel so desperate and am not willing to accept this as my quality of life!!! please anyone out there that could help me, you would be saving my life, and the life of my family as i feel i am becoming an increasing burden to bare.
One of the most important things to do is to work with a MG expert with whom you have a very good doctor-patient relationship. It sounds like you have severe MG and that you have been handling a great amount of stress due to your weakness. You need to work with a team that can set up a long term care plan. The center of that team will be you and your neurologist. I really should not go into specific treatments with you over the internet. I would say, however, that there are other types of immunosuppressive treatment that can be effective in controlling resistant MG. These treatments require a careful weighing of risk and benefit, and a strong long-term doctor-patient relationship. Hope this helps.
John G Quinlan, MD
Professor of Neurology
College of Medicine
University of Cincinnati