choose the right neurologist
I am going on 5 yrs with MG Occular. I have seen 5 doctors. My ophthalmologist ( the first to suggest MG Occular), the first Neuro who prescribed pyridostigmine with no info about MG and did not know the side effects. 3 doctors later I am with a good neurologist but it's not an easy diagnosis or treatment. I research everything. Be your own advocate and ask questions from your doctor!
I agree with David. I started with Ocular MG and was prescribed Prednisone by my primary doc, on a reducing basis, because she had not heard of MG. Of course, when I stopped taking it I got double vision. Tests began that diagnosed MG. I had also gone to an eye doctor who told me not to take Prednisone but I did anyway. Even with the ocular MG under control, it progressed to generalized which is now keeping me pretty weak.
My neurologist is a good one but he is booked up so they make an appointment for me several months out and then pulls it in if someone cancels. The other neurologists in the same office won't touch it.It is so strange this disease effects people so differently. I have a co-working who also has MG (ocular only) and he takes nothing, when it hits him he waits a few days and it goes away on its own. I'm like WOW, I take a wide variety of meds to keep my MG at bay. But as David says... i agree, a neurologist is what you need for MG. My eye doctor simply wanted to give me refracted lenses, that what he sells. fixing the cause is the solution, not working around it, plus for me it went all in later and i had other medical issues to deal with than just my eyes.
Oh so true. On the MG journey, you have to be the pilot. Even a great doctor may see you every two or three months. He can't possibly keep up with an episodic disease course that may produce dozens of different symptoms, on any given day. Read everything you can. Keep up a dialogue with other sufferers, like you can on this website, Don't be afraid to ask people for their experiences.
And on a related subject, Ocular MG is MG. I think we do people a disservice by treating it as a special condition. It's exactly the same antibody working in exactly the same way. It's just a question of where you experience symptoms, After 5 years of "ocular" only symptoms, you could - like me - have generalized MG symptoms
tomorrow. For that reason, I believe a neurologist, and not an ophthalmologist, is always the specialist of choice.
