Myasthenia Gravis

[helensh]

I am currently undergoing tests for myasthenia gravis it appears to be a long drawn out affair with bloodtest after bloodtest, and many visits to the neurologist. Many days I wake up exhausted,laboured breathing sore muscles and double vision. At best I can manage to function in the mornings but then can,t get off the bed in the afternoons. I am taking Mestinon 60mg every 4 hours with very little relief.
Any reassurance greatly received.

[amm34]

Hi.
Look, the dx is shocking for many people, including me. I have no idea how old you are, but the first questions that entered my mind were how is this going to affect my career. I was a second year med student at the time, which lots of plans. I was thinking how it would affect pregnancy- only 22 then, but I want that later, and lastly I was so frustrated that my quality of life was changing. As i have mentioned before, i have done almost every tx in the book- Cellcept, azathioprine, cyclosporin, IVIG, plasmapheresis, and mestinon for symptom control. Steroids were the only thing I refused. It's tough. Perhaps the worst part is that it is a clinical dx. There are blood tests that are very specific, but that not sensitive. They currently have the tests to classify the 'seronegative' population, but it is not mainstream yet, but proven in Britain. Look, the way I see it is this, MG is an unfortunate condition, but of all autoimmune or neuromuscular conditions, if I had to have one, this would be it. It can be treated, and is the bets understood of all autoimmune diseases. The think is, nobody responds to tx the same, hence the reason I have done just about everything. SOme I was allergic to, others the side effects kept me away, and now I am doing ok. I lead a pretty normal life, but yes, there are limits that will drive you mad. Talk to your Dr. about your mestinon dose. Initially I had no response to 60mg qid, so he increased it to 120 qid. Ask him/her first. Feel free to keep the post updated or ask questions or vent-- we all have had different experience and life circumstances and all have a unique perspective that may help. I hope all works out.

-amm34

[helensh]

Very grateful for your reply, will keep in touch with this forum. By the way I am 60

[Capt. Larry]

Hi Helen,
Reading your post brought tears to my eyes because of empathy. I am a VERY active 66 and out of the blue last Dec. I experienced double vision that lasted 24 hrs. Had exactly the same symptoms as you afterwards and while mestanon was kicking in. Went to eye dr. who could find nothing. Referred to another eye dr. who had neurological speciality and he referred me to neurologist. He knew immediately that I had mg. Tests proved him right.

I now take only 30mg of mestanon every 4 hrs and am back to my previous activity level. I am no dr. and everyone is different but don't rule out another doctor that specializes in mg. Hang in there girl, "this too shall pass"...

Larry