View Single Post
Old 03-08-2013, 12:33 PM
cait24's Avatar
cait24 cait24 is offline
Member
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
cait24 cait24 is offline
Member
cait24's Avatar
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
Default

Paul your symptoms sound like mine. It took a year of specialist and tests to finally get diagnosed with MG. If it were not for this forum I am sure I still would not have a diagnosis. I would not have persisted, I would have just accepted what the doctors said.

I did not have success with the first neuro. Several people from this forum suggested I see a neuro optomologist because they recognize the eye symptoms and that I go to a big teaching hospital where they see MG all the time. They were right on both accounts. The neuro optomologist checked for sustaining an upward gaze and I could not and he could see my trembling eye lids and he said I think you have myasthenia gravis. Even though my antibodies were negative he ordered the single fiber emg. It came back abnormal, a definitve diagnosis for MG. So do not let them tell you that since your antibodies are negative, it cannot be MG. I would insist on the SFEMG.

Most neuro, especailly in a small town, may never have seen a patient with MG. I live in a small town. There are 4 neuro groups between this town and the next. One neuro would not take me on as a patient when he heard they suspected MG. Of the 3 other neuros, only 1 had a patient with MG. That neuro thought I had MS. I am glad I traveled to the large city which has a teaching hospital.

They put me on mestinon before the SFEMG because I started falling. I felt results in a half hour of the first dose. I first noticed how much clearer I could see, I had no double vision and I could take a deep breath comfortable. It gave my legs more stamina. I could finally turn over in bed which I could not do for a year. It only temporarily relieves symptoms The mestinon lasts only 3.5 hours for me, but everyone is different. They have increased my dose twice in 2 months since I started. I have not experienced any side effect at all. I do feel the symptoms come back as it get close to my next dose. The symptoms never go away, they just subside. And somedays the drug works better than others because some days my symptoms are worse.

How do you feel in the heat or after a hot shower? MG is worse in the heat. Muscle respond better in the cold.

Good luck on your diagnosis and hang in there. Welcome to the forum but sorry you have to be here.
kathie
cait24 is offline   Reply With QuoteReply With Quote