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    DEBBIEANNE1124   96,865
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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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  Member Comments About This Blog Post:

PICKIE98 6/9/2013 7:50AM

    The resources you have had access to in the past four years are life changing. Sight, hearing, navigation, and of course the biggie:Leone your guide dog.

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KARENLEIGH32 6/8/2013 11:27PM

    Glad you are doing so well, hope it continues!

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MEADSBAY 6/7/2013 9:16PM

    You really have a lot of issues and need to focus on your treatments and keeping yourself well.
So glad your docs and modern medicine have helped you.
emoticon

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PATRICIAAK 6/7/2013 8:56PM

    You handle your medical challenges with an optimism that needs to be emulated. Thanks for being a leader and overcomer.

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IRISHMUM3 6/7/2013 8:20PM

    emoticon

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WILLOW49 6/7/2013 4:26PM

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CHUBRUB3 6/7/2013 2:13PM

    Hugs Debbie. You are a conquerer, you can over come anything.
Prayers & blessings.
Angela

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CELEST 6/7/2013 11:57AM

    You are such a cheerful soul, who would have known you have such serious health issues you're dealing with? As you say, thankfully medicine has come a long long way. emoticon

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TWEETYKC00 6/7/2013 11:55AM

    I hope a cure can be found, it would be great.

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L*I*T*A* 6/7/2013 11:07AM

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COCK-ROBIN 6/7/2013 11:04AM

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LINDA! 6/7/2013 11:02AM

    I am very happy that there are so many advancements in medicine...I would hate to see your suffer from the many symptoms of this disease. emoticon

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SYLPHINPROGRESS 6/7/2013 10:46AM

    Debbie, I'm always so impressed by your high spirits and your beautiful attitude. I learn a lot from you.

Love,
Laurie

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