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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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It was found by a physician who suffered from myasthenia in the 1930s (a few years before Marry Walker discovered treatment with AchE inhibitors). http://jama.jamanetwork.com/article....110#qundefined Ventolin was first used, to the best of my knowledge by a neurologist in Mayo clinic for the treatment of certain types of congenital MG. He is now conducting a clinical trial. http://clinicaltrials.gov/show/NCT01203592 I decided to try taking it, based on the way I understood the mechanism of my illness. (none of the neurologists involved in my care ever suggested it). At that time I was nearly bed ridden, unable to sustain any activity for more than an hour and required frequent respiratory support. It led to significant improvement. For the first time since my 1 year old niece was born, I was able to hold her for a few minutes on my lap without having severe breathing difficulties. At a later stage my current neurologist added mytelase (as mestinon and neostgimine were no longer effective). I started taking, by his advise, some nutritional supplements, because my nutritional intake was very poor for more than a year due to my chewing and swallowing problems. This led to some improvement which made me think I should gain a better understanding of nutrition and other environmental factors that can effect my illness. There is still a lot I have to learn, but with more knowledge and understanding I have much better control over my illness. (although, I am no where near remission or even near leading what normal healthy people would consider a normal life). |
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