Thank you Kathie for the quick responce,
They did one plasmapheresis treatment at the hospital and 2 IVIG treatments. Because of hospital rules/insurance, we could not stay in the ICU any longer. He had to be moved to a long term care Hospital and only a few doctors even visit this hospital. Our choice of neurologists is very slim. We were assigned one when we arrived. It is very frustrating because I don’t think he has a strong understanding of MG and other doctors that might have a better understanding don’t visit this hospital.
I also appreciatte the information about the mestinon. It's so hard to know without speaking to him, so it helps SO much to hear from someone who knows more than myself.
Also, the listing of Dr's and idea about teaching hospitals was very thoughtful.
I will keep updates coming. Thanks again.
Quote:
Originally Posted by cait24
My heart goes out to you in this difficult time. Can you request a consult with an MG specialist? Are the current neurologists treating him, specialist in MG? Having a neuro experienced in MG is very important.
I think art chick is right that he needs MG treatment. Mestinon only temporarily relieve the symptoms. I take 90 mg 4 times a day and 180 time span at night and they are considering upping my dose because of increased weakness. And I can still walk and talk.
Here is a list of doctors associated with the MG foundation of America, maybe there is one in your area.
ALso try to contact a teaching hospital in a local major city and ask for a referral to a MG or neural muscular specialist.
Please let us know how things go. A fellow MGer in trouble hits very close to home for us.
My thoughts and prayers are with you and your family
kathie
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