Lack of medical support
I live on Cape Cod Mass. and was diagnosed with MG in 2021. I went to a Neurologist and was given the normal cocktail of medications. I was on them for 15 months with no improvement.
I was sent to see a Neurologist in Boston, which is about an hour and a half drive. I went thru a series of blood tests and EMG tests, with no definitive way to proceed.
I was asked to follow up with further visits. It was difficult for me to travel to see the doctor in person, and since there was nothing he could do or had done while I was with him, I thought that a Tele-visit would work. He agreed and after the first session he gave up and said he couldn't do this.
I went to see another Neurologist on the Cape and this guy was totally unaware of MG.
So now I am doing nothing and I am not sure if this going to be OK going forward.
When I first got the double vision and lazy eyelid symptoms I was taking Gabapentin, I was assured that there was no connection between the two. I see now that studies are being done that show that there is a connection.
Does anyone have reliable info about this?Gabapentin and MG
Rediculous. Sorry you’re going through this. Dr Jane Louie is good. She’s in Framingham ma
CommunityMember495,
I am so sorry you are going through this nightmare of finding a good MG Dr. Have you checked out the Myasthenia Gravis Association MGFA partners in MG Dr.'s for your area? I can tell you from experience that not all of these Dr. know about Seronegative Myasthenia Gravis or treat it. If your blood test were normal but you have symptoms of MG.
I personally have had that battle of finding someone. I ended up have to go out of state to have that MG/Neurologist advise my primary and local neurologist about treatment for me. I am seronegative meaning nothing shows in my blood work, for what I have been tested for. From my understanding if you had just a straight EMG test those for most people with myasthenia gravis are normal. (My local neurologist told me this & he actually gives EMG tests around here.) It would take a different type of EMG to possibly help with diagnosis of MG. But a few of us don't have positive test results with these either. But we still have MG.
Best Wishes!!! Sally Farrier... Myasthenia-Gravis.com (team member).
https://www.youtube.com/watch?v=jInidXBDeM4
