Myasthenia Gravis

My name is Andrea Williams; I was diagnosed with Myasthenia Gravis and underwent a thymectomy prior to my 30th birthday. For more than 30 years my treatment has consisted of 20-30 mg of prednisone (every other day), loads of calcium and Vitamin D. The only exacerbation came as a result of attempting to discontinue prednisone and convert to Imuran. This resulted in my symptoms returning. An increase to 40 mg daily was required to return to normal. I am now back to 30 mg every other day and I am symptom free.

My husband had a career in the military and we spent the next 1 5 years (post diagnosis) traveling all over the world and consequently I never met another person with my disease. When we moved to San Antonio, TX I discovered there was a support group, however, by the time we were unpacked and settled the support group had disbanded. In the last few years, Elroy and Gail Tschirhart have started a new support group in San Antonio and as a result I have been exposed to other Myasthenics, new treatments for the disease, and a greater awareness of pharmaceutical implications. I also realize how fortunate I am to have been so stable with this illness.

I have been asked to write a testimonial about my experience with Myasthenia Gravis but have procrastinated because I felt I had nothing beneficial to say other than I had lived with the disease for over 30 years. A life changing experience in August 2009 has brought about this testimonial.

My husband and I returned from a long weekend vacation on Padre Island and that night I ended up in the Emergency Room with food poisoning. I woke up in the ICU, 1 8 hours later having been fully entubated. The doctors did not know what form of bacteria they were treating so I was started on four broad spectrum antibiotics, they also administered high dosages of prednisone, insulin, potassium and a blood thinner since my adrenal system had failed. The day before I was released a culture identified the bacteria as Shigella and three of the antibiotics were immediately discontinued. I was released from the hospital 1 0 days after admission. I came home with 2 days worth of an antibiotic (Levaquin), cholesterol medication (Zocor), a high blood pressure med (Lisinopril) to control albumin in the urine, Glipiside for high sugar levels, and glucose measuring equipment. I am glad to report 1 am back to normal. My sugar levels are still being monitored to determine if I have a permanent or temporary problem, Castroenterology has given me a clean bill of health and I am back to my normal dosage of 30 mg prednisone every other day.

Since this event I have ordered and received a medical alert bracelet. I highly recommend this to everyone. If my husband had not been present in the ER the doctors would not have been aware of the MG. After being informed of my disease they wanted to administer Mestinon and do a Tensilon test. When informed that I could not tolerate Mestinon and that Atorpine would be necessary if they used Tensilon, a senior physician took charge and changed my treatment protocol and that worked beautifully. My medical alert bracelet has my name and disease on one side and “30 mg prednisone every other day” and “do not administer Mestinon/Tensilon” on the other side.