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)

“Vit D is low...17 (but nearly everyone has low Vit D in these latitudes)”


Hi juliejayne, I also live in a northern locale and was also diagnosed with a vitamin D deficiency. My doctor immediately put me on a vitamin D3 supplement of 5000 IU daily. Your level (whether measured in nmol/l or ng/ml) is much lower than mine was.

The way I see it, it wouldn’t matter to me if low vitamin D was common among people at my latitude. If my health was being compromised by a vitamin D deficiency, I would talk with my doctor to get his advice on how to supplement and at what dosage.

Ditto, Audrey. Studies have shown for a long time that autoimmune diseases and a vitamin D deficiency are related, but it's only recently that they're saying it could be a causal relationship (the deficiency can possibly lead to an AI). Past studies focused on lupus, but now they're seeing it in people with other AIs.

Mine was as low as yours when it was first discovered, JJ. I live at a higher latitude, too. I need to take at least 9000 - 10,000 IUs per day to keep my numbers in the normal range (barely).

And 710 B12 is "ok," but not great. It certainly couldn't hurt to take a 5 mg. tablet once a day. You can't get too much B12.

Some people, including doctors, pooh-pooh the importance of nutrition. Nutrition is everything and that includes having sufficient levels of vitamins, albumin, iron, and so many other essentials for health.

I wish I could get you over here for doctoring, but I'm not sure they would be any better. Sad, really.

Annie

Well this is the level of "expertise" here in the Netherlands.

710 B12 is considered High (I am still taking B12 since you can't overdose)

Vit D... The GP informed me that 1000 IUs for a couple of weeks would be enough to bring my Vit D level back to normal...

So I managed to twist his arm to get another blood test for Vit D. 5 weeks after starting the supplements, because the MG Neuro will be calling me to see if Vit D has "cured" all my MG symptoms. I go for the blood test on Monday, and hope to have the results a week later.... we shall see.

”Vit D... The GP informed me that 1000 IUs for a couple of weeks would be enough to bring my Vit D level back to normal...”


Hi again juliejayne, this information from your GP is shockingly inadequate. From what I’ve learned from many different sources, it can take many months to rebuild your vitamin D levels, and even when you do, you often need to keep supplementing at lower amounts to maintain what you’ve achieved.

In my case, I started at 5000 IU of D3 but am now taking 7800 IU daily (7000 from a D3 supplement and 800 from my multivitamin). My doctor told me to stay at this level for another 6 months and he will then authorize another blood test.

mrsD is an expert in this area, and perhaps she will also comment if she reads this thread.