[Interested]

Hi, I recently joined this group and am trying to figure out how to navigate this site. My forty year old son was diagnosed with MG in October, 2012 via eye muscle tests, blood tests, and a CT. In December he had a thymectomy and had a thymoma removed. He does not need chemo or radiation, but needs to get a CT every six months for the next five years. He is now on 60 mg of Mestinon three times daily, and 20 mg of Prednisone twice daily. The neurologist said he would probably have to adjust his dosage when he goes to back to see him the end of this week.

His ptosis and double vision have subsided. However, he now has problems chewing, feels like he has rubber bands in his mouth, sometimes has problems getting words out when preaching, and has weakness in his arms and legs. He also notices that he feels like he doesn't have enough air when he tries to sing and can't whistle. I know the neuro doc is still trying to find the proper doses of medicine, but he worries his neurologist may not be agressive enough.

My son has a very busy schedule and doesn't have time to join communities such as this one. Actually, I think he is just too exhausted to do much once he gets home. Consequently, he asked me to check things out for him because I am retired. Since I am also very concerned about his condition and what may lie ahead, we are both hoping that we might find some pearls of wisdom from this site.

Some of his questions include asking people if they could offer advice as to helpful things they wish they would have known when they were first diagnosed, whether there is a special diet that could help, if certain exercises are helpful, and what should he be asking his neurologist, also, are there any tips that would enable him to prevent fatigue.

We never heard of MG before October, but it certainly seems to be a disease that encompasses your entire life. Seems like my son went from thinking his ptosis was allergy related, getting a diagnosis of MG, surgery, oncologist visits, and numerous muscular problems within a few short months. Any advice would be greatly appreciated.

Thanks,
Interested