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Old 03-31-2012, 11:01 AM #3
cometcatcher cometcatcher is offline
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Join Date: Mar 2012
Posts: 3
10 yr Member
cometcatcher cometcatcher is offline
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Join Date: Mar 2012
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Quote:
Originally Posted by AnnieB3 View Post
Hi, Cometcatcher. Like the name! I'm a science nerd.

Choline is a B vitamin. Most B vitamins are good for you, depending upon the dose. B6, for example, is not one you should have too much of, especially if you have a neuropathy.

Choline, and B12, are precursors to acetylcholine. Technically, I suppose you could get too much choline and that might lead to too much acetylcholine, which is not good for anyone, MG or not.

Cholinergic "shock" is not really the right term. It's called a cholinergic crisis or cholinergic toxicity.

You might want to talk to your doctor about dose amount or frequency. Also, since gastroparesis is the issue, you may want to talk to them about Mestinon syrup. You can titrate it more easily and it absorbs in the GI tract better.

More isn't necessarily better with Mestinon because you can get too much acetylcholine. Perhaps taking it every 4 or 5 hours. Do not change anything unless you talk to your doctor. An MG expert can give you more advice on dosing, even if you don't have MG. It might be a good idea to consult once with one!

Did they ever figure out why you have dysautonomia?

I hope that answers your questions. Just supplement sensibly. You don't want to do more harm than good.

Annie
Finally, a response! And a helpful one! I'm glad you like my name, ha ha. Hooray for science nerds.

I didn't know choline was B-vitamin related. I'm interested in choline not only for the production of acetylcholine but also because it helps other neurotransmitters along. Brain fog is a monster for me. I guess I'll really just have to ask my neurologist about the risk of cholinergic crisis (and I don't know why I always call it "shock!" I've read "crisis" a hundred times and yet it's like my fingers are on some strange autocomplete when I type it).

Dosing frequency is tricky. It's strange, because I feel like the Mestinon affects different parts of my body at different... rates, almost. It takes quite a lot of it to make my guts starts to move, but then, at that dose, I start to have trouble breathing. Do you know if that's a common problem? Having different parts of your body respond at different levels?

They haven't found out what's causing the dysautonomia, and it doesn't look like they're going to. Fortunately, it is mostly only the GI issues, brain fog, and nerve pain. Which are, of course, maddening, but less than what many others with the condition have to deal with.

Thank for the feed back.
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