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stephenbaker (@stephenbaker)

Unknown Neurological disorder mimics MG

Brain & Nervous System | Last Active: Mar 11, 2020 | Replies (17)

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@stephenbaker

Teresa, thank you, thank you, thank you!! I could give you a big tight hug!
This journey is like a ‘war’ and so often, I feel like I am battling against the system! It feels like I have to convince Neurologist that the symptoms I have are real even though often they can see the ptosis for themselves!! Thank goodness that my GP and family are behind me!!
My ACHR was 113 last July. I was advised that I needed to be over 300 to be positive. I don’t understand why the 113 doesn’t count. Lol.
My MuSK was negative last July.
Interesting you stating that a positive response to Mestinon in itself is a positive for MG. Is that just for MuSK or both, MuSK and AcHR?
I am taking lots of time resting, I can’t do anything else otherwise my symptoms catch up with me, and I am useless for anything and just have to go to bed and recoup my energy.
I appreciate the diet advice and will follow for sure. I have been trying to do little walks at times. You have to laugh, that there is a 2.6km walking loop that I do. A lady last week ran past me three times! If you don’t laugh you’d cry hey!
I actually want IVIG as I want to stop this progressing which it continuing to do, but as I don’t fit into any tick box, further therapy is denied to me.

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Replies to "Teresa, thank you, thank you, thank you!! I could give you a big tight hug! This..."

You asked…
"Interesting you stating that a positive response to Mestinon in itself is a positive for MG. Is that just for MuSK or both, MuSK and AcHR?"

I'm saying that because I had a non-Mayo neurologist have his med student put an ice pack on my eye, chill my eyelid, then said, "that looks like MG". I didn't believe him, what a dumb test! He gave me mestinon, and it helped. And he told me that if the Mestinon helps , it's MG. Perhaps the 'tensilon test' that I had at Mayo is a shot of Mestinon? I'm not sure, but my eye popped open with the tensilon test, but I was in the neuro opthamologists office.

we MG patients are called Snowflakes , I don't like the term, but our neurological symptoms are the same, but different at the same time. For example, I took a medication one time, and couldn't swallow, I was choking on my drinks. I investigated, found the med on the April 2015 list, discontinued the med, and I haven't had a swallow problem since. My PCP ordered a gastroenterologist to put a scope down my esophogus and look. I cancelled that gastroenterology procedure, and went with the University of Illinois April 2015 MG FAQS. I'm glad I did. PCPs or GPs don't understand MG. I'm always referring to the information on http://www.myasthenia.org, and http://www.myastheniagravis.org with my physicians.

another time, a colonoscopy was ordered by my GP. The colonoscopy was to use an anesthesia found on that medication website. I cancelled the colonoscopy and had a ColoGuard test done instead. No anesthesia .

I've had 4 days of Mayo neurology testing me for just about everything, and the result was MG. I'm very grateful to have had those 4 days.