Acetylcholine
 

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. :cool:

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.

Yes I have read all these reports, and it seems likely that they are correct.

But having a scientific bent, I thought that this would be a perfect opportunity to prove this once and for all, albeit with a single test subject...me.

The Doctors here say that 1000 per day will be enough in a couple of weeks. So I am following their advice. But I will get tested on Monday... 4 weeks... and we will see. I expect that the level will not have changed much, I certainly don't feel any better.

I will let you know.

Answer is, 1000 per day for 4 weeks increased the Vit D level by 1nmol/l.
The GP suggested himself that that could be a variance between testing labs.
So zero improvement.

He is now suggesting that I have a much much higher dose for a couple of weeks.

So from one extreme to the other... now on 100,000 once a week for 2 weeks. Plus of course the existing 1000 per day.

And of course that is going to mean yet another blood test in 2 weeks.

Hi juliejayne, hope your large increase in dosage helps!

Here is a link to a site that has some useful information about vitamin D:

http://vitamind3-cholecalciferol.com/

Here is another link from that site, titled “How to Calculate your Personal Vitamin D Dosage,” with suggestions for vitamin D dosage based on body mass and sunlight exposure:

http://vitamind3-cholecalciferol.com/vitamin-d-dosage/

Thanks for the links Audrey. There is a lot of information suggesting that Vit D is great for heaps of things. But what I can find very little of is details of what Vit D deficiency will actual cause by way of symptoms. It is usually that it will worsen other things.

So whilst I believe that it is important, I am disappointed that there seems to be no way to identify which symptoms, could be cause or improved by it.

This enables doctors to blame anything that they can't explain on Vit D deficiency, and if you don't get better, then you must be doing it wrong.

wrong!!!!
vit d25 test should be done every 3 months
if there is a cancer risk your levels should be as close to 100 as you can get
my levels are 78.6 as of now and i take 6000iu a day NOT 600iu 6000iu
id find a new doctor
information is wrong

Dave, I know. But this is the view of the entire Dutch medical establishment.

However the fact that 1000iu per day over a month, made zero difference has pushed them to give me 100,000iu once a week for 2 weeks. It will be interesting to see what difference this makes.

After the medical profession has stopped playing "guess the right level" I will be taking your advice and taking 6000iu per day.

Hi juliejayne, in my case my PCP thinks a vitamin D deficiency is contributing to muscle weakness in my legs.

Here are a few links about symptoms of D deficiency:

http://www.drfranklipman.com/symptom...-d-deficiency/

An excerpt from the above link listing common symptoms:

Fatigue
General muscle pain and weakness
Muscle cramps
Joint pain
Chronic pain
Weight gain
High blood pressure
Restless sleep
Poor concentration
Headaches
Bladder problems
Constipation or diarrhea


http://www.livestrong.com/article/29...-d-deficiency/

http://www.womenshealthmag.com/nutri...n-d-deficiency


Hope this helps!

Statins cause bad leg problems. My Neuro-muscular Dr took me off them 3 years ago.
Mike

That is my problem when trying to find out what Vit D deficiency causes...
These are all so general, that anyone can go look, and say, yes to several... for me;
Fatigue
General muscle weakness
Weight gain
Poor concentration

But the others NO..

And then there is Double vision, a major problem for me and not listed.

Well just got the results... 2 weeks on 100,000 boosted my Vit D to 52, so according to the GP I am fine at that level.

It did nothing for the fatigue or double vision though...suprise! :rolleyes:

Dave, I shall be taking your advice and will start on 5000 units daily.