[Fay]

First signs of MG for me was Palsy on the left side of my face. I woke with blurred vision and when I looked in the mirror I thought I must of had a stroke. Once I got the diagnosis it was still about 12 months before I got IVIG – Life changer it’s been about 10 years now and would have a fit if I was told I couldn’t have it any more, combined with Mestinon, Pred and Azathiaprine I am probably the best I can be. My eyes have definitely deteriorated but I have a collection of autoimmune conditions. Lupus, Neuromyatonia to name a few combined with being a Diabetic I never know what condition is making feel the way I do. Thankfully I work for a company that is supportive and allows me to work from home. I still get horrendous muscle spasms which can appear anywhere in my body but prior to IVIG I was useless.

[Fay]

Hi I have been taking Mestinon 3 times a day for more than 7 years now and have none of the side effects you are referencing. Basically Mestinon has been a bit of a lifesaver for me.

If I don’t take it I have difficulty swallowing but otherwise ok. I get CFS with my MG anyway and have pre taking Mestinon so I know that is not causing it. I also am very skinny but I have a few extra Auto Immune’s that seem to keep me slim. Hope you find a resolution to your issue.