Coping With Myasthenia Gravis

I was diagnosed on November 11, 2008 with generalized myasthenia gravis My symptoms first appeared during August of 2007. At first I thought that I was experiencing numbness. I had difficulty walking, climbing stairs and I couldn’t make my hands do what I wanted them to.

I had several tests: bloodwork, CT scans, lumbar puncture, MRIs, evoked potentials, EMG and single fiber EMG. I had a five day treatment of IV prednisone in Oct./07. My symptoms went away for four weeks. In January/08 my right eyelid started to droop. I am not satisfied with my first neurologist so I ask for a referral to a second neurologist. By June the left eyelid is starting to droop. At this point I start to wonder if this is numbness or weakness. At one point when I was in the hospital ( my numb/weak arm was hanging at my side). The nurse asked me why I was holding my arm like that. I told her that it was numb. The nurse told me that numbness is a sensation and weakness is a power. Within 15 months I got progressively weaker and weaker.

I got to the point where I had difficulty climbing stairs, walking, lifting, washing my hair, etc. It really felt like I had concrete arms and legs. I also started to have a very weak neck. At times I had shortness of breath. I knew that something was very wrong but I didn’t know what. At the end of the summer 08 I started to resarch my symptoms and came across myasthenia gravis My doctor had referred me for an EMG and I was waiting for the test. In September 08 I had the EMG done. The doctor said that he wanted to do furthur testing. He had me come back a week later and did the single fiber EMG. I had to wait until November 11/08 to get the results. The single fiber EMG confirmed the diagnosis of generalized myasthenia gravis.

The neurologist has put me on Mestinon 60mg 4x/day and Azathioprine 50mg 1x/day. So far so good, but it has only been a week. My symptoms have improved but are still there. My eyelids have improved alot and my walking is greatly improved. I am being referred to a surgeon about a possible thymectomy. I am trying to do research so that I can make an informed decision.

This diagnosis is so new, I am still coming to terms with everything. I am a 36 year old mother of three children aged 8, 4 and 2. I don’t smoke, drink alcohol or do drugs … I don’t even drink coffee. I consider myself a healthy person so this is alot. I believe a positive attitude goes along way and I am hoping that it takes me all the way to remission.=)