Hi Lois... My diagnosis story is long and tedious but here goes:
In June of 2002 I had a hysterectomy - during the surgery they accidentally cauterized my ureter (tube from kidney to bladder) - I had 3 procedures and then reconstructive surgery to correct the problem in October of 2002. I never felt completely well following the reconstruction - and then started having trouble with my vision about six months later - had an MRI - had Optic Neuritis - was referred to a neurologist - my vision eventually improved and he repeated an MRI to rule out MS and sent me on my way. Then in May of 2003 I started having difficulty swallowing, having difficulty with speech - cleared my throat incessently and went to the primary doctor. I had also noticed that I was having difficulty on the stairs - my legs would get weak before I got to the top of a flight of stairs. My primary doctor tested me for Lymes Disease - test came back positive but then when they did the more specific tests they came back negative. She then tested me for MG - the binding AChR came back positive. She reffered me back to the neurologist - he repeated the blood tests and the binding and modulating came back positive. He is not an MG expert but prscribed Mestinon and started me on Prednisone - about 6 months later he added Imuran. He referred me to a specialist at the University for consultation regarding thymectomy. The "expert" said I had a classic case of Myasthenia and should schedule the thymectomy. He scheduled a SFEMG to measure the level of weakness...He did not tell me to go off my medication so I was taking Mestinon, Prednisone and Imuran. The SFEMG was normal. He then decided I needed to be off the Prednisone and did a fairly rapid taper - over the course of about 6 weeks I went from 40mg to nothing - I had the second SFEMG (a different doctor performed the test) about two days after stopping the Prednisone and had been off the Mestinon for about 12 hours. It was normal. He also did a muscle biopsy and it showed muscle atrophy which he attributed to Prednisone. He told me I was fine and that there was nothing wrong with me. I asked him to put that in writing, to stop billing under the Myasthenia Gravis code and to give me a referral to a Psychatrist...he referred me to Mayo Clinic for a 2nd opinion (really my 4th opinion). I checked into a hotel with my 4 sisters stopped taking the Mestinon ( I was off the Imuran and Prednisone for about six months by the time I got in to Mayo). I was off the Mestinon a little more than three days and had my third SFEMG and it showed a lot of abnormal jitter and blocking so I have a confirmed diagnosis of MG - Had a thymectomy in April - get IVIg every two weeks - take Imuran and Mestinon. Crazy...
Gabe