Hi Rach:

I am new to the forum and have been following your story. I'd like to tell you about myself in hopes that it will help you continue in your resolve and purpose. Sorry for the long email, in advance.

You are not alone in the journey you are on trying to get an official diagnosis. I have some of the same issues as you as far as test results. I was diagnosed in 2005 by 2 different neurologists based solely on clinical symptoms. I went to a neurologist in Atlanta, Ga, who told me my symptoms were so strong that he didn't think we needed to spend the money for the testing other than blood work. My blood work is sero-negative, by the way. He gave me Mestinon and said that if it worked, then I definitely had myasthenia gravis. It was amazing how much it helped me even the first day.

I then decided to see a neurologist in my hometown in Tennessee as I didn't want to continue to make a long drive to Atlanta. My new doctor also said I definitely have MG and did no further testing. I started out on Mestinon and Prednisone but had to go off Presnisone (blood pressure, weight gain). My doctor started me on IVIG's and wanted me to take CellCept. My family doctor wasn't too sure about the CellCept and thought it would be a good idea for me to go to Duke University to the MG clinic there and see an "expert" which I did.

That was the most traumatizing doctor visit I've ever had in my life. I saw a well-known research doctor who, upon clinical exam, confirmed an MG diagnosis and said we would do the EMG testing since I had never had it done and am sero-negative. He also tested for the MUsK antibody which was also negative. The EMG tests were negative. He kept doing them repeatedly and kept re-checking my clinical signs. This went on most of the day. I felt like I was in shock when my husband and I left there. After the tests, he wouldn't say what he thought but asked me if I would be willing to come back in 3 months. I said I would, but knew I wouldn't. He really frightened me. He did tell me, though, that the first thing he would do is have me go on CellCept - which is the information I was looking for.

When I got home, I confessed to my neurologist that I had gone there for a second opinion. I hadn't wanted him to think I didn't have confidence in him. Anyway, he thought the whole thing was pretty much ridiculous (my paraphrase). He said that the EMG test would not be true because I was on Mestinon and had just had my IVIG treatment a few days before. The whole experience DID make me doubt myself, though, and whether I really had MG or something else. I was constantly questionning my doctor about it for a couple of years. I don't do that anymore - my symptoms and response to specific MG treatments is all I need to know. What did hurt me, though, is my self-doubt which caused me to try to ignore MG and push myself way too much and now I am on short-term disability which may turn into long-term disability.

Hang in there and stay true to yourself in spite of any and all "professionals." In time, it will work out. Don't stop taking your Mestinon! All you need to know is that it helps!

With love,