I haven't been diagnosed with MG. I have an appt. with my neuro in a month for some new abdominal weakness & repeating an EMG. Two things that I'm confused about...I had mildly elevated ganglionic acetylcholine receptor antibodies. I read this can be associated with paraneoplasms & I have had a PET scan that was normal. But when I hear acetylcholine I think MG. Also, would MG cause CPK levels to elevate? Mine were tested at 250 (high) then redrawn 3 wks later and dropped to 119. I don't have answers & it's driving me crazy. Thanks for any advice!

I cannot find the article now, but I read that there is sometimes cross-reactivity between muscle and ganglionic ACHR antibodies. Did the Muscle ACHR or musk come out positive?

Do you have MG symptoms such as muscle fatigue and weakness? Are you experiencing any autonomic symptoms that are associated with AAG (autoimmune autonomic ganglionopahy?

What symptoms prompted you to be evaluated for these antibodies?

thanks
kathie

I have tested negative for MG antibodies in the past but I honestly don't know how recently they have been checked. I believe the ganglionic ones were checked because I do have autonomic symptoms, orthostatic hypotension, fast heartbeat when resting, this comes and goes. Recently I feel as if my gut is slowing down, distended after meals etc. My muscles fatigue easily, but I am in horrible shape.

I really don't know what's going on. :/

I would ask for the muscle and ganglion acHR to be repeated. Even if they feel the ganglion ACHR is significant for your autonomic symptoms, I believe the treatment is the same as MG - mestinon and anti-inflammatories.

Let us know what they decide
kathie

Hi, jenng. It's very frustrating to not know what's going on. What that tells me is that you haven't been to see a good enough doctor!

http://www.mayomedicallaboratories.c...s-eval/11.html

http://www.netwellness.org/question.cfm/40086.htm

There aren't that many "regular" neurologists who have experience with autonomic issues. Are you near the Mayo or Cleveland clinics? If you say where you live, someone might be able to refer you to an expert.

Since some of the autonomic diseases can have cancer associated with them, you really need to get some help right away. I'm glad your PET scan was clear (for now).

A consult with a rheumatologist would be a good idea, too (if you haven't done that already). They can assess you for polymyositis, etc.

Also, have you been thoroughly evaluated by an endocrinologist? Sometimes it takes more than one type of specialty doctor to figure something out.

Has anyone done a tilt table test on you, to check for POTS?

I'm sorry you're going through so much. It might not be MG that you have, but it hardly matters what—what matters is that someone figure all of this out for you!

Annie

I live in CO. I think the closest Mayo is in AZ. I see my neurologist the end of June for another EMG/NCS so I will ask him about repeating labs. I just had an EGD/colonoscopy that was normal, as well as a mammo. I do see a rheumatologist once a year to check labs, I think that appt is August. I've had none of the official autonomic testing, so I will ask my neuro about that as well. I've thought going to Mayo or Cleveland Clinic, but honestly don't know if we could afford it. My insurance is pretty limited to their circle of docs. Thanks for the input.