I am very grateful to have discovered this support group for I have found answers to so many of my questions as a recent inductee into the confraternity of myasthenia gravis. I had heard of the disease in a cursory way, but knew nothing really about it until I was diagnosed.

My story begins with a long-planned visit last November to visit our Army helicopter pilot son and in his family in Wiesbaden. We had an evening flight direct from Charlotte, NC to Wiesbaden, arriving there at 9 AM German time. For the next two days I felt very strange, but attributed the feeling to jetlag, dehydration, age, stress and anything else I could imagine. It was the Saturday after we arrived when I knew something was really wrong. We went to one of the Christmas markets in a nearby town, and as I took my first bite of an authentic German bratwurst I discovered that I could neither swallow nor speak. The episode passed quickly, and I managed to eat the Brat (And it was very good!) and resume speaking. But when this happened again a couple of days later, instead of all of us getting on the train and heading for Brussels as planned, I was packed off in a krankenwagen to the Dr. Horst Schmidt Klinik fuer Neurologie in Wiesbaden. After being poked and prodded, MRId, Catscanned and many other tests, the consensus was that Id had a small stroke, and that we should remain in Germany for at least 2 months for me to recover before the stress of flying home. One of the neurologists had some inkling of MG involvement, for he sent me off to have that terrible nerve/muscle response test, but it proved quite inconclusive, and there was no follow-up blood work.

We came back to the states not two months later, but about two weeks, and immediately checked in with a neurologist who concurred with the stroke hypothesis initially, but wanted to have some blood work. I was called about 5 days later and told that I had not had a stroke, I had blood markers for MG that were off the charts in her words and put immediately on 60 mg prednisone daily. Three weeks later I was hospitalized because of breathing issues, and it was during those few days that I was introduced to Mestinon, the MG wonder drug. The first time I was given it the symptoms just disappeared for about 5 hours. But those five hours were miraculous! Treatment was the Prednisone, later reduced to 40 mg and Mestinon, 60mg every 4 hours. Through February and March I had severe breathing issues, occasional swallowing/eating difficulty, speech problems and my right arm and neck were woefully weak. I think the low point had to hold my head up with my left hand so I could shave under my chin. That sort of crystallized the reality of having a chronic disease.

Then on April 1st I started CellCept. I had many misgivings about this, but the neurologist, who, it turns out, specialized in MG (He was part of the Duke University MG clinic, and went on to be a Fellow at Mayo Clinic treating MG) gave me the confidence I needed to go ahead. And so much has happened since about the 15th of April: no more breathing issues, nor swallowing. The morning I could pick up and drink from a full coffee mug with my right hand was a cause for celebration. I was finally able to get back to practicing the piano. I could walk without dragging my right foot. And I could yawn and sneeze, two things Id not done since my first encounter with MG last November. I would not categorize my recovery as remission yet still have some speech issues, occasional double vision, and infrequent eating difficulties. And there is still that pervasive sense of exhaustion that so many of you describe, but I am looking forward to a gradual reduction in the Prednisone, because that is the medication that seems to cause me most stress. I thought at first Id get used to it, but Im not sure I ever will at that high dosage.

I look forward to joining in the conversations and hope that I am able to contribute something useful to you who know so much more about this disease than do I.