Being hit suddenly with a rare disease: Myasthenia Gravis

Posted on 27 September 2009 at 8:40 am in Uncategorized.
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About 5 years ago I woke up and could not see too well.  My eyelids would not open all the way.  I felt like I do sometimes when I have a cold and my sinuses are clogged up from allergies or a cold and can’t open my eyes all the way.  Only this time my right side of my face was numb too.  Not completely numb but like you had a tooth worked on and it was still numb from the Novocain.
Well, I went to work which at that time was about an hour away.  As the day went on I felt more numbness and my eye lids got worse.  I went to the main office up the street from my office to do a mail run and to met with my boss.  After the meeting, she asked me about my eyes.  I told her what I was feeling and she sent me home to get it checked out by the doctor.
That was the last day of work for me, 5 years ago.  I had the worse drive home in my life.  I went to the doctor the next day and saw a great nurse practitioner.  I told her my problems and she sent me to get some x-rays.  I told her I thought it was a bad sinus infection.  Well apparently she know better because I had the x-rays done that afternoon.   She said she did not see any signs of infection and wanted it checked out further.  She referred me to a Neurologist.
My neurologist set up a bunch of tests and soon got the diagnosis of “acute myasthenia gravis”.  This is a rare disease that affects the involuntary muscles usually starting with ocular.  So, I was started on medications and the rest is history.  The medications did put the disease in remission but apparently the damage was done for the eyes.  The severe blurred vision, double vision and sensitivity of light leaves me legally blind.  This disease is not curable but medication can put it into remission, as long as you take the medication.
Not all myastheniacs are affected this way.  It can really start a multitude of different areas of the body.  You can read more on it   http://www.myasthenia.org   The Myasthenia Gravis Foundation of America MFGA.
You can find a ton of information on the internet to help explain it further.  My neurologist recommended that I search it out and read all I can on it to understand it better.
I do have some eye sight left and when sitting still I can read with the help of magnifiers.  But the double vision, blurred vision and the paralyzed muscles that make it so the eyes don’t move together make it hard on doing daily tasks.
People are funny, they understand complete blindness but not so much vision impaired.  I finally got a white cane to help with walking, shopping and all because I have so much difficulty with navigating uneven ground or even seeing at all in bright light.  But, for the most part I can take care of myself still and that really matters… to me.

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