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judylaufer 
I am desparate to learn as much about this as possible. My dad 79years went into JFK Hospital in Boynton Beach and was diagnosed with this as he all of sudden could not swallow, eat and his speach became very slurred. They ran tests and this was his diagnosis. He had a count of 20 (?) They started med and that did not agee with him, they did 4 blood cleansings and it has now been 10 days and he is not seeong any improement. The neuro says it takes time, but in the meantime he is growing weaker, They had to insert a PEG Tube in his stomach for nourishment.
They now have on steroids as he was having difficulty breathing. He refuses anything with a ventillator. I feel the Drs are at a lost and just don't know what else to do for him. Any encouragement or direction would be greatly appreciated. Thank You, Judy
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Hi Judy,
So sorry to hear about your dad. I live in West Palm Beach, so
am very familiar with JFK hospital. My Mom was in there many times.
Do you have a neurologist yet? If so, let me know who it is. I
might know them.
I was diagnosed with MG about a year and half ago, but am not
sure that is what I have along with Fibromyalgia, which I know
for sure I have. I had three neurologists say it was MG and three
say not.
But, I have done immense research on it. There is a support
group in Boynton Beach. You can call and talk to Marilyn Cohen
at 733-8512. She is very nice.
MG is a very strange disease. It takes awhile to get everything
regulated and many doctors are not that familiar with it because
it is not that common, about 14 cases in 100,000 people. However,
they do have a newsletter which is very informative. You can
go on the Myastenia Gravis website and order it.
I wish your dad all the best. Having a good doctor is the key.
I found a wealth of information on the internet and read and
read and read. Many things the doctors don't tell you!!!
Good luck and if you have any questions, I'll be glad to help.
SaraG
SaraG
Sara, Thank you SO MUCH for the support contact number for Marilyn. I will let my Dads wife know about her today. The neuro my Dad has is a Dr Mark Goldstein. Its so difficult to know exactly whats going on as I live in Jacksonville, and I want so desparately to get Dad here to the Mayo. I really appreciate your reply. Judy
judylaufer