Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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TaraU 10/08/2011

Hi, I have symptoms of mg, but do not have a concrete diagnosis yet. Tried mestinon for 6 months with a lot of symptoms, so my neuro stopped it. Now Im looking to connect with friends that can relate to what I'm going through. Family can understand only so much.

snowbeltfolkie 10/08/2011

Hi Tara! - where are you, in MASS?
I live near Portland, ME, but my Neuro (neurologist) - is in Boston.
I would wholeheartedly recommend my Boston Neuro to you, if you wished.
(I was sent to the Boston Neuro, by my local Neuro.)
- Ross

snowbeltfolkie 10/08/2011

I forgot: there are many MG patients, on here - from MASS. (At least compared to ME.) They will also have many recommendations for you.

newmugg 10/08/2011

Glad you found this site Tara. The people on here quickly become your friends who understand what you are going through and can give great support and information.
Have you had a MUSK antibody test? Some with MUSK can not tolerate mestinon.
Good luck!
~sherry from texas

deleted_user 10/09/2011

i am from western ma- i highly recommend going boston for care-MG is so rare that they are up on treatments, etc. I was told that I definitely have MG after my single fiber EMG but after being evaluated by him he is not totally sure that I have it. I don't fit the typical case. Mestinon made the me feel much worse-I have started Imuran and am on Prednisone. Awaiting for the insurance company okays the IVIG before I can an a couple months of treatment to see if I feel better. So right now I am in limbo-understand about the family understanding so much..
deb

deleted_user 10/09/2011

Hi i live on the South Shore and i see a nuero in Boston..

TaraU 10/10/2011

Hi, I am from Chicopee near Springfield MA. I did go to a neuro in Boston, but he didn't actually specialize in MG so he sent me back to my neuro here. I was on mestinon for 6 months with lots of side effects. Did anyone else have side effects? I did also have a MUSK test which was negative. They did think at one point I had ocularpharyngeal because of my throat tightness. It's been a complete nightmare through this whole thing. Can anyone give a name of a neuro in Boston? Do any of you ever get together face to face?? Sorry for all the questions, Im just so glad not to feel alone.....

snowbeltfolkie 10/10/2011

Tara - just sent you a message, with some info, on my Boston neurologist. You'll get more recommendations! - Ross

TaraU 10/10/2011

Thanks Ross!! I do appreciate it.

deleted_user 10/15/2011

Hi Tara,
I live in Fitchburg, MA. My neuro is at St. Elizabeth's in Boston (Dr. Kenneth Gorson). I was sent by my neuro in Leominster to see him and he is great! I would have answered earlier, but I just had a thymectomy and am just now going through the older posts that I missed :) Welcome to the group and if I can help you in any way, let me know.

deleted_user 10/15/2011

Hi Tara,
I live in Westfield. I just started seeing a new Neuro and PCP in Lenox. I do not have an official dx yet, but it looks like I'm headed that way. I'm waiting to get blood work done. I've been through the rigamaroll of seeing docs in Springfield, UMASS Worcester and out to Boston, but none of them were able to help. I've only seen the new docs twice, but so far they've been more helpful than any other doc I've ever seen and they actually call you back themselves when their is an issue. I can give you their info if you are interested? I know lenox is hike, but Its well worth it for me anyways if it means getting answers.

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