Coping With Myasthenia Gravis

I am a 41 year old female and was recently admitted to hospital with what was thought to be a stroke I ended up in ICU after becoming unable to speak, swallow, or move my left arm and leg. I had been suffering prior to hospitalisation with left arm and leg weakness and speech difficulties and weakness in my tongue and jaw, making chewing and swallowing food difficult. These symptoms were initially put down to the fact that I had recently had surgery to repair my right rotator cuff, and it was just an effect from the anaesthetic, or positioning of my body while under general anaesthetic.

I had consulted the GP twice, and had seen the surgeon who operated on my shoulder to voice my concerns, as well as try to contact him by phone several times over a week, only to be told by his nurse that I should take myself to an ER if I had concerns - which I did end up doing.

Unfortunately, due to a pre-existing blood condition (essential thrombocytosis),tests showed that my platelet count had become extremely high, and the symptoms were thought to be indicative of a stroke caused by a blood clot (I had had previous venous and arterial blood clots in my arms, legs and liver and was already prescribed warfarin). Whilst I was in ICU, I was heparinised for the ? clot -although none were apparent on CT scan, and was fed through a naso-gastric tube. At no time did I lose sensation in my weak limbs, but can only describe it as having a sock full of cement hanging from my shoulder.

My ability to speak improved, but I still have trouble if I have to speak a lot, when I start to slur my words, and have changed to a soft food diet, as things such as steak require too much chewing, and I fatigue. I have days where I can not even lift my arms enough to feed myself, and have trouble holding my head up. If I get too active on my “good” days, I will usually have several “slump” days where I can barely get out of bed. I also have some eyelid weakness if I have to look to the side, or in an upwards direction for any length of time.

I have not been able to return to work (as a nurse), as my neurologist appointment is not until February 2009. I have consulted a rheumatologist/immunologist, who suspects that I do have Myasthenia Gravis but says it has to be investigated fully by a neurologist (the Christmas period is not a good time to get sick). I also have other auto-immune disorders (scleroderma, sjogren’s syndrome, and essential thrombocytosis). I look forward to a diagnosis, whatever it is, and treatment so I have a somewhat “normal” life. By the way, it was only by my own investigating on the internet, and suggestions that led the Dr’s to suspect myasthenia gravis as the problem, so if you have anything similar, do your homework and arm yourself with information to present to your Doctor.