Maybe someone here knows more about this than I can discover.

MG tests are all based on searching for the antibodies that work against enzymes that clean up excess Acetylcholine.

Is there no test for Acetylcholine itself.

It occurs to me that those who are seronegative, may simply have a naturally low level of Acetylcholine. Low level Acetylcholine can cause other symptoms, hives for example. Or depression.

Just a thought and perhaps someone can provide more information.

"MG tests are all based on searching for the antibodies that work against enzymes that clean up excess Acetylcholine."

The tests are for AchR AB. The antibodies are against the acetylcholine receptors (not against acetylcholinesterase, the enzyme which breaks down acetylcholine).

So you need to have extra acetylcholine present a lot of the time so that it gets into the receptors whenever it can.

Mestinon (not antibodies) inhibit/s acetylcholinesterase, the enzyme which breaks down acetylcholine. A very good thing

(maybe just memorize the words, you can reconstruct what they mean when you say it out slowly).

"Is there no test for Acetylcholine itself.

It occurs to me that those who are seronegative, may simply have a naturally low level of Acetylcholine."

There is a form (maybe more than one) of CMS caused by insufficient release of acetylcholine from nerve terminals. That would be treatable with Mestinon, again, the idea being to save all available acetylcholine actually released from the usual breakdown (by normal levels of acetylcholinesterase.) Mestinon inhibits the breakdown enzyme, the acetylcholinesterase

I don't know how much anyone ever wants to test for a CMS so to the extent they don't, a patient could actually have insufficient acetylcholine release.

Yes, that was what I was thinking.

It seems that I am seronegative. SFEMG can't be done, because here in Netherlands they ONLY do SFEMG on the eyes.

And as I don't have droopy eyes, the expert says it can't be MG. That is even though I respond very well to even small doses of Mestinon.

It occurred to me that I may simply have a low level of Acetylcholine. I have always tired quickly, and lacked stamina, even as a child. But since there is no test for it, and no chance that the Health service here is going to agree to look for CMS, I am kinda stuck.

I am seronegative, and I was diagnosed by a SFEMG on my eye muscles, even though I don't have droopy eyes.

Abby

Hi, JJ!

The type of CMS that causes a reduced amount of acetylcholine is pretty serious. Mestinon doesn't really help that kind of CMS.

You might have another type of CMS, where not enough gets to the muscles, just like in MG. There are over 100 genetic mutations!

There is a test to check on ACh levels. It would probably cost a lot over there.

B12 is one of the precursors for choline/acetylcholine, so make sure you get enough of that.

Doesn't it strike you as odd that we patients are often the ones doing the thinking and researching, while doctors simply check us off of their daily to-do list?

I really wish you could know for sure what is going on with your health. It can drive someone bonkers.

Annie

Well I did finally get them to do the test that I asked for 18 months ago.

B12 is high... 710, so no problem there.
Vit D is low...17 (but nearly everyone has low Vit D in these latitudes)