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Old 11-25-2014, 02:18 PM
kimmie1000 kimmie1000 is offline
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Join Date: Apr 2012
Location: Philadelphia
Posts: 9
10 yr Member
kimmie1000 kimmie1000 is offline
Junior Member
 
Join Date: Apr 2012
Location: Philadelphia
Posts: 9
10 yr Member
Default Choline Supplemention???


Yours is a good question. A lot depends on whether you have Myasthenia Gravis (autoimmune) or Congenital Myasthenic Syndrome (genetic). I can only speak to those with myasthenic syndrome, the genetic version of MG, and my own journey to living an OPTIMAL life.

Anyway, I'm still searching for historical and NIH material connected with the subject of choline supplementation. I, too, have dysautonomia, cholinergic dysautonomia, to be exact. Even before Mestinon I had dysautonomic symptoms like hypothermia. Here's the kicker, my dysautonomic symptoms got worse when I hit perimenopause. Perimenopause was the trigger to setting off 3 genetic mutations, hence 3 neuromuscular disorders. Hypokalemic Periodic Paralysis type 2 (HypoKP2) because loss of progesterone. Progesterone is a reproductive hormone which when diminished, along with estrogen, kicks off perimenopause. As of 2011, scientist now know there is a correlation between progesterone and potassium, so every time I had a menstrual cycle I had profound muscle fatigue to the point of paralysis. I also have Paramyotonia congenita (PMC), and am being evaluated for Congenital Myasthenic Syndrome (CMS). Because I take medications and supplements for the the first two and can now filter out what's not PMC and HypoKPP2, I was able to take note of the specifics of other symptoms.

That being said, for some unknown reason my neurologist put me on Mestinon, but it really helped with my symptoms. He just gave me the prescription and told me to test out what dosage worked for me from the 120 mg. Well, later, when it became plain I was dependent on it for my symptoms, he seemed nonchalant about me being on it, doubting I had CMS, so I came off to test whether I really had a need and almost died. I started having cerebral vascular hypoxia which caused a mini-stroke, violent heart strokes, arrhythmias unrelated to HypoKPP2 (low potassium), the inability to make my own tears, saliva, sweat, nasal mucous or bronchial mucous, incontinence, etcetera. Dysautonomia is dysfunction of the autonomic nervous system, which seems to accompany many with neuromuscular disorders, but mine is directly linked with insufficient acetylcholine. We're thrown out of whack due to the disorders, so then we have dysfunction. I now take 120 mg at bedtime to prevent the cerebral vascular events, which included passing out upon waking to the alarm clock and a mini-stroke. I asked for an increase in my prescription, but instead got a referral to the Mayo clinic, but, hey, I work a 40 hour a week shift, fortunately from home being on medical accomodation, so I can't NOT treat my symptoms and didn't know when I was going to get an appointment with a Mayo doctor. I was still having adverse symptoms so went to a Myasthenia Gravis group for advice, and they helped me determine an OTC solution, which was Huperzine A. I was able to resolve daytime symptoms with 50 mg every other day, 100 mg on alternate days. At that time it was enough. I'm now exacerbating, so now take 200 mg upon waking, and another 200 mg in the afternoon. Now I get to the point, which is to say that all Mestinon and Huperzine A do is prevent a certain enzyme from breaking down the acetylcholine produced from your nerve cells, but what if you aren't producing enough acetylcholine to begin with. There are many types of myasthenic syndromes, some involve premature breakdown of acetylcholine, others can involve the nerve cells not producing enough acetylcholine to begin with. Because post-menopausal women are deficient in choline anyway, due to a diminished amount of estrogen, upon which choline production is dependent in women, scientists say that choline deficiency causes 1 in 3 post-menopausal women non-alcoholic fatty liver disease, 400 to 500 mg is recommended. Having a bottle of choline chloride from my early post-menopausal days, I started with 1400 mg, (3 times the recommended dosage), and my thigh-hip-glute muscles had significantly less weakness, Gower's sign is nearly gone, and I could produce enough saliva so that i did not gag to the point of vomiting when brushing my teeth. My neuro knows about me being on Hup A, but I've only been on the choline chloride for 3 days and am seeing this kind of improvement. Once I see the Mayo doctors they may suggest a drug called 3,4 di-aminopyridine, which increases acetylcholine productions from the nerve, but this works until then.

Now my goal is to separate CMS from my cholinergic dysautonomia. Just the very specificity of having cholinergic dysautonomic suggest a diagnosis of CMS. Anyway, I'll let the Mayo doctors do their genetic testing.

Note: I have gastrointestinal paralysis, too, which is not corrected with Mestinon, but only with the drugs and supplement I take for HypKPP2, however, I also have a contrary diagnosis of fast gastric emptying, a symptom of cholinergic dysautonomia. This hodge-podge of symptoms is the consequence, of course, of having multiple disorders.

Also, here's a caveat. Because i take N-Acetyl-cysteine to control insulin spikes, and congestion due to concurrent respiratory infections, along for acetyl-l-carnitine and acetyl-l-carnitine arginate for my cognitive issues and to help Mestinon with the nighttime cerebral vascular events, I'm being supplied with the necessary "acetyl groups" to make acetylcholine. I don't think choline chloride alone could help me. Also, taking choline alone with these acetyl group supplements wouldn't be enough, because it's my belief I'd probably have to take a significantly increased dose of choline chloride to meet my medical needs. I'm hoping that 3,4 di-aminopyridine is FDA approved soon so I don't have any issues getting it prescribed.

Finally, I found one article on supplementation, but it's from 1980. I'm continuing my search.
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"Thanks for this!" says:
suev (11-26-2014)