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Old 06-13-2017, 08:02 PM #1
MG_Kat33 MG_Kat33 is offline
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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
Default Struggling with Acceptance & Limitations

Hello, new here and to G I apologize for the long post. Thanks in advance to anyone who reads it and responds!

I was diagnosed with MG in March at 33yo. I presented to the urgent care with ptosis and was sent to a neuro-opth and neurologist, given the ice pack test, reflex tests, etc. Blood work came back positive for anti-ACHr binding and modulating. MRI normal and CT scan showed no thymoma but not really any enlargement, either. I have about a 4-5 year history of double vision episodes in bright light, high heat, or overexertion, with transient ptosis once in a while. I also had arm weakness episodes but at under 30 yo and obese, I thought it was from laziness or carpal tunnel - since I'd push myself to the point of soreness. Neuro started me right away on 50mg prednisone for 3 months, and I'm now on 30/60 and also just started 100mg Imuran a week ago. No mestinon at all. So that's my history...

The current issues I'm having are mostly around accepting the diagnosis and the limitations it places on me. My episode that led to diagnosis was likely brought on by stress, and the fact that I haven't gone into a remission and feel like I've actually continually gotten worse since diagnosis is probably due to stress as well. I'm changing jobs and moving from San Diego to Las Vegas on the 28th! It's been a stressful couple of months leading up to this point and trying to coordinate all the moving details is also incredibly hard when you are single and your family is pretty stoic. They care, but they don't understand what MG is and how it works, or that I'm not actually anywhere near having it under control with a stable treatment plan right now.

I tend to be a very anxious and Type A personality, so I think I work myself into states of anxiety that then have me thinking maybe I have something more serious or I'm heading into a crisis, etc. Ever since starting prednisone I've had increasingly worse diffuse muscles twitching, but primarily in my legs and feet. I have to constantly tell myself it's not ALS, but it's exhausting trying to keep myself calm.

I have some questions:
Should I request to have an EMG?
Are there electrolyte problems or other issues that might cause the twitching that I can do something about? (I take calcium and D3 currently as well as try to eat bananas and leafy greens for potassium.)
I am a good candidate for thymectomy based on my age, but I was wondering if there were any resources listing experienced surgeons in the U.S.?
Long shot - but if anyone here is in or near Las Vegas, is there a good neurologist? I looked at the MGFS website list of doctors and they only listed one doctor and he's affiliated with the worst hospital in the city.
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"Thanks for this!" says:
AnnieB3 (06-13-2017)
 

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