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Originally Posted by JerzyBoy
I am meeting with the surgeon on Dec 14. With everything I've read, I am leaning towards having it removed. I'm scared to death of the surgery and skeptical and realistic about what it can help, but what choice do we have? Considering how bad my symptoms have been in the short amount of time, I think I need to do this sooner or later and hope for the best. I just wish my double vision wasn't worth now than when I went into the hospital, it's very frustrating.
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JerzyBoy, Sorry about your health issues. Just saw this thread tonight. I'll give you a little of my story. I am a 49 y.o Male and was diagnosed roughly 13 years ago. I too had to go to General Practitioner 3x's before they finally gave me a blood test, even though I told them I had a sister who had MG and my symptoms were classic MG. I then was told to see a nearby neurologist. The biggest mistake I made (regarding Dr's) is that this neurologist only had one other patient for MG, all he knew was to give prednisone and mestinon. After much too long, I switched to a different Dr where he concentrated on two diseases, MG and Lou Gehrigs Disease up in Hanover\Lebanon NH. (Dartmouth Hitchcock). At that point, he slowly weaned me off the prednisone. he had me do some IVIG (immunoglobin) along with a dose of solumedrol. Then switched me over to cellcept. (mycophenolate mofetil). That made my symptoms much better. However, I still had double vision and my eyes were permanently skewed due to weakness in muscles that never corrected themselves.
As to my other big mistake. I was not in good physical shape, I was overweight (obese). I didn't exercise, I didn't eat right, I drank too much soda and junk food. I took no supplements. After reading a lot of books. I started taking a lot of supplements (Borage Oil, Fish Oil, Flax Seed oil, Pantethine, Pantothenic acid, vitamins A,B complex,C, D3, E, ; etc etc Also, I started eating better (no junk food, low carbs), I started exercising more (gym 4-6x per week). Also, starting almost a year ago, I gave up 100% on diet coke. I feel great!!!, My symptoms are 99.9% gone. I had surgery to fix my eyes but the .1% i'm missing is I still have some slight weakness in my eyes for full rotation of motion of eyes. However, I have no other symptoms of MG and I feel better then I have in decades.
In short, Find another Dr one that will help you while you are at your worst and get you stabilized. Also, evaluate what you eat and drink and supplements you take. Eat healthier, drink healthier, take supplements (do your own research). Good luck to you.