17 years with MG

My story starts with double vision. While exercising, I would get double vision. When I would rest, it would go away.

Receiving an MG diagnosis

One day it was so bad I went to an eye doctor, he had no idea what it was. So I contacted my family physician and he immediately sent me to a neurologist. I was diagnosed right away and put on prednisone. I was getting no where with the prednisone, so my neurologist also suggested having a piece of tape over one lense of my glasses. It worked for driving and watching television, but I wasn't happy with that fix.

A new doctor saved me

After seeing this neurologist for about 3 months and developing my issues, like weak neck muscles, weak torso, breathing spasms and much more, he recommend a neuro-muscular doctor. What a change to my life. I was put on 60mg of prednisone, 120 mg of mestinon 3 times a day and cellsap. After 7 years, I came of the prednisone and cellsap, also was a patient #19 for an infusion of Rituxan 1 a week for 4 weeks. Let me tell you this changed my life back to almost being me. I have had the infusions 7 times over the last 17 years, my longest remission has been 3 years.

Learning to cope

I'm take my mestinon everyday, still 3 times a day, 120mg each time. If I miss a dosage, I'm okay, but I try not to miss. I understand that my daily life had to slow down, I can't run marathons anymore, but I can play with my grandsons. I have no double vision anymore either.

I rested, take my meds and life can be good. I suggest to you all that suffer, find a really good neuro muscular dr. That will listen and this is important, Be your own advocate. I wish you all well