Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Here it is almost midnight. And we have driven 500 miles today and I want to send messages to all those who have been so supportive of my trip to Vanderbilt, but I have had to be content with catching up here and there, so see you in the morning. It was a good trip. b.
Cathy
Love, Becca
We arrived in dreary weather to a place that had seen better days, rather like me. We hated to leave the cat in the camper with sleeting rain and no electric hookup, but he didn't seem to mind. Probably just glad the 300 mile trip was over and he is used to the camper. We had that lovely dinner and went to bed exhausted and then woke up to more cold rain and wind --wandered into the right place in the hospital complex hours before the appointment wandered the halls to the cafeteria, etc. Should have been enough walking, but no. When the nurse took my blood pressure and it was up, I knew once again my body was betraying me by adrenalin kicking in and so it was. We had a wait punctuated by the wrong doctor appearing which was confusing to all, since he must have been at least 30 years older than the doctor we expected to see. My doctor was very kind with a sense of humor and dimples when he smiled which he did often. It was a long saga and I was glad to be done with it, and he probably was too, and I only forgot little important bits, but I had a copy for him. Since it went back 65 years and 35 of those searching for answers, I had really had to condense and highlight. He looked at the blood studies and SFEMG which he said was clearly abnormal in ways suggesting myasthenia. Examined me and said he felt sorry for the weeds. Complimented me on being the strongest patient in his clinic, but still very confident of the MG diagnosis and seemed ready to start a trial of steroids when I felt the need. Would examine me in six months unless problems and we could communicate over the My Health at Vanderbilt. Gave me a script for more pyridostigmine (Mestinon). So I left with a definitive diagnosis and a definitive doctor, and hope for future improvement. He felt the process is autoimmune and steroids would tell the tale. Regarding congenital myasthenia, since no one in the family is symptomatic or considering pregnancy (including me, he asked) he was willing to see what medication response tells us and wait for better testing for the many different congenital problems, since I don't fit well into any of the boxes. Altogether a VERY successful visit, well worth the 300 mile trip--a doctor and a diagnosis (not reluctant). I knew you were with me and it made a great deal of difference throughout the dreary weather and Mestinon free time and the discouragement of having a good day at the wrong time. Bless all of you, I certainly feel blessed. b.
Gail
Hugs Ange