Coping With Myasthenia Gravis

I initially had leg weakness off and on, nothing I was alarmed about. January 2004, 33 years old, I started having double vision, so I went to the eye doctor. Since then, I’ve had to wear glasses with prism lenses, so my eyes don’t fatigue as quickly. By May, I was having trouble speaking and doing my hair (or anything I had to raise my arms for…I explain it as feeling like I’m carrying concrete blocks). I mentioned these things to my chiropractor and he diagnosed the MG He recommenended I go to my family doctor and told me what bloodwork to ask for, so I did. While waiting 2 weeks to get into the neurologist, I had a CT scan and MRI (no thymoma) and came down with a sinus infection that made it difficult to breathe. I was admitted to the hospital and was put on Mestinon and Prednisone.

Within a few days, I was back to myself. After that I’ve had a few relapses, but nothing a medicine adjustment didn’t take care of. Falling is my biggest fear. I’ve fallen alot, but a few times I’ve hit my head when falling and I’m afraid of being alone and unconscious. May 2007 I started having leg weakness. I virtually woke up one morning unable to get out of bed or walk. Prednisone did not pull me out of this. I was off work for a month and in the hospital nine days. While there, I had 5 plasma pheresis treatments. I relapsed again in September and started getting IVIG treatments. I’ve had 5 so far and don’t feel they are benefitting me. I’m wondering if a thymectomy would help me. Over the past 4 years, my lifestyle has changed alot. I avoid sugar and caffeine. I try to eat light meals. I go to bed early and have the same routine everyday…even weekends. We are researching how to make our home more accessible for me. Luckily, I have understanding and supportive family, friends and coworkers, but I hate feeling helpless.