I had a thymectomy in 2005 and have enjoyed relative remission since then. Occassionally I have break through symptoms but mostly just ocular. All of a sudden about a month ago, I began to weaken. The entire right side of my face fell - like I'd had a stroke. It became difficult to lift my limbs and in the end I could not hold up my head or chew. That is when I went to the ER and was immediately admitted to the ICU. I was told I was very close to going into respiratory distress. It was extremely scary!! They started me on IVIG and steroids immediately. After five days I was much better and able to go home. I remain weak but improving. Now I'm on Cellcept and steroids.
I continue to wonder how long I will be able to hold down a job and if/when I should start looking at disability. Does anyone know whether or not having a Myasthenic crisis makes it more or less likely to happen again?
My advice to anyone going through what I did is not to wait as long as I did. I was told that I was very close to respiratory failure and would have had to be intubated. Once the head and neck muscles begin to weaken - get help quick!
Also I"m just needing encouragement and support from fellow MG people. It is a very lonely, misunderstood disease and I'm struggling to get back on my feet. I live alone and have no family.
Thank you