Originally Posted by joefnh

Hello I would like to introduce myself, my name is Joe from New Hampshire and am a recently diagnosed new patient with MG.

My first observation....it's scary loosing control over parts of your body

It seems that I have had some minor symptoms of MG in my legs, feet, voice and breathing for about a year and things went out of control just about 8 weeks ago with a lot of weakness and breathing problems (not a crisis) including double vision for the first time. This led me to my ophthalmologist and then to a neurologist. After blood tests, CT scan, a tensilon test and a trial of mestinon, I was Dxd with MG without a thyoma.

I am considered serum negative most likely due to the fact that I have already been on a modest dose of Imuran for about 3 years for Crohns and Colitis. The Imuran would suppress any clinical measurements of the antibodies during a blood test. I had a very strong positive reaction to the Mestinon but do find it quite tough on my GI system. I wonder if there any hints or tips on how to tolerate the GI side effects.

The plan for now has been to take the Mestinon (4 - 6 tabs 60mg per day), increase the dosage and hopefully blood levels of Imuran and I had my first 5 days of IVIG last week (Gammunex-C 2gm/kg). The hope is that the IVIG will buy me time until the Imuran can build up to its new strength, hopefully controlling the MG a bit more. I was surprised at how much the IVIG wiped me out though as the week went on, it took a couple of days to bounce back, but I am seeing signs of improvement and I just finished the series last Friday.

Overall right now I'm a but overwhelmed and frankly scared of what I have read and experienced so far. I notice a lot of the members talking about a thymectomy but I do not see them discuss a thyoma. Why would the healthy thymus need to be removed?

This really does seem to be a good site with a lot of experience and information.



Joe