POIS Cause/Treatment Discussions > Investigation Areas

Myasthenia Gravis, CMS, and POIS

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ThisType:
** note - have added CMS as that is more likely due to genetic cause.  see later post for more info **

A few people have noted the overlap between POIS and Myasthenia Gravis (MG) symptoms. I believe that in some cases the two are linked (mine included).

In short I get some of the common early MG conditions as a function of POIS ( speech / dysarthria, loss of ability to smile, issues maintaning eye contact, brain fog, etc).

In 80% of people with MG, they have antibodies against the acetylcholine receptors (and have blood tests to mark the issue). Another ~10% have antibodies to the MuSK protein. The remainder have neither.

For POIS a subset of us find that we're able to treat the symptoms with choline supplements (a bio available version). I find that choline makes the MG like symptoms go away.

I have found through 23&me that I have several somewhat common mutations that affect choline processing. MG can have a genetic component in a small number of cases.

I believe my symotoms and the genetic test links the POIS to the MG like symptoms in a meaningful way.

I am working on figuring out what tests to run (given a willing doctor and patient) to confirm / refute that the two conditions are linked in my case( and perhaps providing a diagnostic marker for a subset of POIS sufferers). I do not believe I will show the antibodies given the likely genetic cause.

Any thoughts appreciated
Thanks!
TT

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* note - just modified title to include CMS (Congenital Myasthenic Syndrome - discussed in post below)

POISse:
Very interesting thoughts. I also believe that there are overlaps between the two. Few members (myself included) use Mytelase which is usually prescribed for MG.
If POIS really is an auto-immune condition, it is not surprising to see multiple other auto-immune diseases like MG, celiac or CFS in POIS patients.

Quantum:
Hi TT,

Yes, since there are many members have benefits from cholinergic supplements, there seems to be a "cholinergic deficit" type of POIS, and no surprise that symptoms are similar to MG.

Keep us updated on your results in this personal search about the cause of your POIS !

It is very interesting to see that 23&me showed you have SNPs in genes controlling the cholinergic processes.  I would like to have those results for myself.  But I cannot have my DNA tested for now, because I own a business and this would become a problem with my business insurances ( there is no protection of the privacy of your genetic data in Canada concerning insurance companies, and, even if my insurance company cannot force me to do DNA testing, I have the obligation to send them my results if I choose to have DNA testing done ... and then, it can become very, very complicated and expensive ! )

Muon:
@ThisType: What supplements are you using?

ThisType:
@muon Thorne phosphatidylcholine is the main one
@POISse did you find you had the antibody markers? Do you find the mytelase has strong benefit?
@Quantum thank you - it's remarkable that you can't get your own screening without giving it to the insurance co's. 23&me isn't medically approved (e.g. likely has too high an error rate - an issue I will also need to control for). 
With that said, yes, it's good to have something to base theories from.  I am certainly still learning.

The papers below ID snps of relevance.

https://www.ncbi.nlm.nih.gov/pubmed/28134761
I have 5 of these choline related mutations listed in this paper (two aren't tested by 23&me)

This study also looked relevant
https://academic.oup.com/ajcn/article/93/2/348/4597666

I also note that I have some mutations relating to acetylcholine receptors that may be relevant.

Has anyone had blood tests showing reduced choline metabolite levels? Are such things offered as part of standard lab panels? The above papers clearly had these tests done (internally?) for research purposes.
Thanks!
TT


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