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Old 06-14-2017, 10:06 AM
MG_Kat33 MG_Kat33 is offline
Junior Member
 
Join Date: Jun 2017
Location: Las Vegas, NV
Posts: 24
5 yr Member
MG_Kat33 MG_Kat33 is offline
Junior Member
 
Join Date: Jun 2017
Location: Las Vegas, NV
Posts: 24
5 yr Member
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Thanks so much, Annie. You've given me a lot to think about!

My neurologist is a smart guy, and has dealt with MG throughout his career but I don't think he's a specialist per se. I do think I need to get a new neuro, but it's pretty impossible at this point. I will have to wait until I am in Vegas.

I think my current neuro still thinks I only have ocular MG, which prednisone treatment is the protocol of choice. However, the last time I met with him I explained that he wasn't listening carefully to my back story - that I had had episodes of arm weakness, etc. and he seemed to believe me. I asked him to put me on mestinon and he put me on imuran instead, stating that he's had a lot of success with his patients . Not sure why the resistance to mestinon other than perhaps he fears it will mask deterioration since it's kind of stop-gap drug, and perhaps pervasive doubt that I have more than just ocular MG.

I have Graves' disease and had my thyroid radio-ablated when I was 16. I've been on thyroid replacement therapy for years and it's been reasonably well-managed. The problem with ordering a lot of tests is that I end up paying out of pocket for them, and I have to balance care with costs.

I think the doctor listed in the MGFA pdf and the doctor the forum members talk about are different but work in the same neuro-group. Seems that might be the best place to start in Vegas Thanks!

I'm currently searching through back-posts and reading up - this is a wealth of information!
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"Thanks for this!" says:
AnnieB3 (06-14-2017)