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June is Myasthenia Gravis Awareness Month

Friday, June 07, 2013

June is Myasthenia Gravis awareness Month...
Many patients go un-diagnosed for a long time with this evil disease. It appears from photos I ahve seen of myself that I ahve had the Ptosis in the eyelids for several years.
How was I diagnosed with MG?
It was an afternoon in november 2011 my daughter, Ashley came to visit walks towards me hugs and kisses my cheek then says "Mom open your eye! What's wrong with your eye???"
I had no idea anything was wrong but my left eye would not open up. Weeks later the same thing happened with my right eye.
Robert immediately called my Optholmologist and they set me up for an appt. the next morning and he carefully observed my eye for a week with daily visits and ordered blood work done. there were 2 things to look for and i got that dreadful call that it was positive for Myasthenia Gravis 2 weeks after I first saw him.
My friends with MG most ahve it more severe than I do. I'm really blessed. It affects their eyes, paralyzes one side of their face, pain in jaw, neck, trouble chewing and swallowing, pain & weakness in their arms and legs and weakness throughout their bodies.
Years ago many patients with MG died from the disease. Today's medicine really helps keep us alive, active and healthy. Gluten free diet and the Paleo plan keeps many symptom free.
My neurologist first started treating me with a pill called Mestinon 3 times a day. It's fast acting can shoot my eyelids opan and keep them open dtill the next dose. Then he started me on a regimen of monthly IVig Treatments as an inpatient of the hospital 3 days a month. This adds longer lasting relief. Later he started me on another pill an immunosuppressant called Cellcept. (used on organ transplant patients and MG) I am happy to say that I am symptom free on all three of these plans. When i see my Neuroloist he will taper me off some of these drugs.
I would really like to have a part time job but my Dr. appointments and treatments in the hospital would keep me from doing so.
I have this odd walk where my balance is so messed up. If I were on a boat I'd have perfect balance. But this may or may not be from MG I also ahve meniere's disease from my hearing loss. go figure.
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