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Old 08-12-2011, 11:04 PM #1
jeatak jeatak is offline
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jeatak jeatak is offline
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Join Date: Mar 2011
Location: New Jersey
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Hi to all, I enjoy this forum and this is my first post. I was dx with myasthenia gravis Jan 2010. The journey to this dx is a long one. In 2006 I went to the emergency room with a complaint of severe headache and right eye droop and was discharged witH dx of migraine headache. My followup with a neurologist was uneventfuL and he told me to look at old family photos as I probably always. had the droop.
I then had 3 episodes of uveitis and "something wrong with my vision". Long story short my uveitis improved, but my vision was worse. When I was able to articulate that I thought I had double vision my eye doctor sent me for an MRI of brain and orbits. It was found that I had something called Silent Sinus Sinus Syndrome. After multiple MD visits I was sent to a specialist in NYC who fixed me up good as new with surgery but he thought I has something more going on and referred me to another MD.
The neuro opthamologist examined me stated I probably had generalized myasthenia gravis and sent me to a neurologist in NYC It turns out I am seronegative and the diagnosis was confirmed with a tensilon test.
Since diagnosis I have had a rough patch what with this hot summer and my mestinon was increased to 60mg every 4 hours. I feel a little better but not normal and the double vision persists despite a prism on my glasses.
All things considered it could be a lot worse, it is nice to have this forum for support.
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DVORA65 (08-14-2011)
Old 08-13-2011, 12:58 AM #2
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Darlene Darlene is offline
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Darlene Darlene is offline
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Wink Nice to meet you!!


Happy to see you have come to be with us. As you can tell there are great and caring friends here to assist you, just let us know if we can be of any help. Our shoulders are here for support in many ways. Check into the following forum for some answers to questions:

http://neurotalk.psychcentral.com/forum77.html

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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Old 08-13-2011, 02:20 AM #3
BlueCarGal
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Poll Hey there, jeatak! I'm Jude.

If you've been lurking here all this time, I suspect you've already been on the Myasthenia Gravis forum & other places hereabouts. Good for you! I'm so glad you've decided to post.

I feel a familial sort of connection with you since myasthenia is for me a family disease that I've known all my life. My dad got his confirming diagnosis from a panel of Army doctors in September, 1945--a month after he found out I was coming. Back then it was a fatal diagnosis; he was told he wouldn't live to see me start school. Wrong! He died not so long ago.

I've had symptoms of something for 15 yrs, & they keep looking at my dad's myasthenia. I don't think that's it, but we'll see. In the meantime you are arming yourself for prolonged warfare. Good!

My dad worked very closely with scads of docs over the years. He was an active partner with his doctors--never waiting for action, always pushing for more & demanding that he be a direct & equal participant. He was lucky to have my mom with him, a partner in his battle. That helps.

My prayers & very best wishes go out to you. Keep coming back. Stay in touch. Ask questions. Then ask more. Till you don't have any left.

Last edited by BlueCarGal; 08-13-2011 at 02:22 AM. Reason: omission
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