Myasthenia Gravis

[livingwith]

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 wa...Read the full article

[Pariss]

I. too, have recently been diagnosed with myasthenia gravis. I never even heard of prior to my diagnosis on August 27, 2008. My life has been forever changed. I was recovering from back surgery and was in physical theraphy when I noticed blurred vision and my right eyelid would sometimes droop. Then my fingers seemed unable to hold a cup of coffee. Just little things that I thought were a reaction to come meds I was on for my back. Then one day I was in the shower (with my walker) when suddenly I could not even stand up. I grabbed for my walker and was unable to hold it. I collapsed and screamed for my 25 year old daughter. I thought I was having a stroke. She called 911 and I was told that I had MG. I didn't have a thymectomy (no tumor), and was started on mestinon which is the drug everyone is put on. I was also put on imuran which can cause tumors and cancer. Being a 2X cancer survivor (ovarian and uterine), I was indeed very cautious about the drug. I cant and wont take steroids. You really dont have much choice if this is what you have. Your life is taking pills every 4 hours and sometimes they work and sometimes threy dont. I no longer work as a bank manager. However everyone is different and alot of people are able to hold down a hob. A nap is not a luxury. Its a neccesity. Stress and fatique will make your symptoms worse, so avoid at all costs!! Its been a few months for me now, and I do feel better. You have to time yourself and not do too much in one day. Please feel free to email me and let me know how you are feeling. Your best advise is get on the internet and read. Its a rare disease and hard to find a good neurologist. Good luck to you and I really hope all goes well.
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[garydonmccluskey]

In oct 09 I had a large malignant tumor taken from my abdomen/ I was ready to start radiation treatments in nov 09, when I became weaker and short of breath/ after a few days breathing became more difficult and was admitted to hospital. after severa days of sitting upright with oxygen, my wife who is an RN suggested steroid just to help me breath. I began breathing pretty good and was released the day before Thankgiving. After 2 bites of turkey and dressing, I had to go outside and let the food fall from my mouth, I could not swallow and began slurring my words. I could not speak a full sentence without holding my chin up with my hand. Three days later after suffering from dehydration my wife took me back to hospital. Everybit of saliva had to be suctioned from my mouth or it would go down my windpipe. Dr Longmire, my neurologist had me moved to UAB hospital in Birmingham AL. The first night on the floor that deals with these types of disorders, I was given 60 mg mestinon and started chewing and swallowing within 2 hr. These folks were wonderful. Unfortunately I was taken off the medication for several days so they could get a positive diagnoses. A world wide expert called DR. O did some type of electical impulse testing for about 30 min. , pulled the electrodes out of my arm and stated "yep, you got it".
So, I am learning to live with it, had one IVIG treatment then, walked without a cane for about 3 months, and am now on a walker. Had plasma replacement treatments 2 wks ago with no results. Hope to get IVIG in about 2 wks.
I was a 300 pound man who had diabetes well under control for the last 20 yrs and could walk up and down hills with anyone, stand and barber all day, but am now learning to live differently, resting real often.
I hope by now that you have found someone that knows where to send you to get help. It is so rare that few people know much about it.
If it is at all possible, I would suggest UAB hospital in Birmingham AL. DR O's team.
Gary