What is Myasthenia Gravis
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. At about 14 cases per 100,000 (in the U.S.), it is one of the lesser kno...
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Getting a second opinion on MG treatment
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After being diagnosed with MG by a neurologist, he directed me to the neurology center at NYPresbyterian Hospital/Cornell Weill Medical College, saying they will be more able to explain MG and help me with treatment. I started seeing a specialist there. After some tests that determined again that I have MG antibodies, but that my muscle strenght was OK, he put me on Prednisone and Mestinon. I wasn't feeling better, so he upped my Prednisone dosage. It helped and I said so during my last visit. I described my current symptons and he told me I'm not giving him anything to work with because I have very general symptoms of fatigue and occasional weakness in my limbs and eyelids. My first thought was, are we waiting until I can't chew my food or breathe to do anything about it? I don't have double vision, or difficulty swallowing and breathing and this is why "I'm not giving him anything to work with." And yet he told me to up my dose of Prednisone again. He knows my reservations about being on such a strong steroid long-term. I'm more open to a thymectomy, but he doesn't want to send me to surgery just because I have MG antibodies. I'm starting to feel like my visits with this specialist are a waste of time. Should I be looking for a second opinion? Does anyone know any doctors who deal with neuromuscular disorders in the New York City area?
Thanks! Posted on 10/16/09, 11:10 am |
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I do think you should try and get another opinion, but I have had similar experiences with the MG specialists for my daughter. Her main complaint is severe fatigue (along with dizziness, clammy hands and feet, and abdominal pain). The MG doctor we are seeing now vacillates on whether or not her MG is responsible. He just retested her antibody levels. (I know because he thought they were low.) When they came back at 69% suddenly the level was "unimportant". I think there are a lot of unknowns and this is frustrating for the docs (and the patients!) Good luck. Sarah 
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Hello,you can contact the MS chapter in your area to see what doctors are registered with the organization. Also I recently had a thymectomy but it was done roboticlydhttp://www.houstoncardiacsurgery.com/Myasthenia_Gravis.htmlone
that is me in the video. I know there are only 8 surgeons in the country to perform thorasic surgery. Check it out.
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