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My Mg Was Missed For Years

I am 46 years old and was diagnosed with MG last June, after going to doctor after doctor for more than 5 years. In 2001, I was involved in a motorcycle accident and could never recover my muscle strength, in fact, I got weaker and weaker at each PT session....3 years!!!Finally, I gave up looking for a diagnosis and in 2004, began treating for multiple chronic pain conditions. I was always very tired, could not walk or stand for long periods, and had to rest on hot days. In 2098,I underwent a spinal fusion with bone graft, after which I began having problems swallowing, got tired chewing, my head was heavy. I went through hell with neuros and progressed to the point in 2011 March to where I was bumping into filing cabinets, slurring words, drooling, etc. My pain management Dr and I didn't know what was going on, and I told him I felt like I was dying, that I felt as though my body was attacking itself. I had to quit my job because I could not work, and the neuro I was referred to ran a battery of tests and found MG. Full body general myasthenia. I'm allergic to IVIG, prednisone, and have just had my first series of five plasma exchange. So far I've noticed nothing. I take Cellcept, 1000 mg daily, and at extreme weak moments, 60 mg of Mestinon. I was taking the mesty 3 x daily, but my respiratory system began acting adversely to it, becoming weaker with each dose, so we had to decrease it. In addition to MG, I also have lupus, axonal peripheral neuropathy, osteoarthritis, fibromyalgia, occipital neuralgia, myofascial pain syndrome.
MGSnowflake66 MGSnowflake66 46-50, F 2 Responses May 22, 2012

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The worst time I had 12 x 60mg mestinon.

I was diagnosed MG when I was 27, three years ago.

I want to let you know, once you get settld the pills, you will get better.

Good luck and god bless you

You have to be carefull with mestinon. I only take half a pill at a time. If you take too much you feel even weaker than before. Its easy to get greedy with it. If 1 pill makes me feel a little better. 10 pills will make me feel great! LOL! Good luck! I've been riding this wave for over 25 years. Since I was 14. You just have to find the right combo of drugs that works for you. It may not go away completely, but it does get better. BTW. June is MG awareness month!