Author Topic: Myasthenia Gravis, CMS, and POIS  (Read 866 times)

ThisType

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Myasthenia Gravis, CMS, and POIS
« on: April 02, 2018, 09:25:56 PM »
** 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

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

« Last Edit: May 02, 2018, 08:06:47 PM by ThisType »

POISse

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Re: Myasthenia Gravis and POIS
« Reply #1 on: April 03, 2018, 09:33:29 AM »
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

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Re: Myasthenia Gravis and POIS
« Reply #2 on: April 04, 2018, 02:02:12 PM »
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 ! )

You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Muon

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Re: Myasthenia Gravis and POIS
« Reply #3 on: April 04, 2018, 02:55:47 PM »
@ThisType: What supplements are you using?

ThisType

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Re: Myasthenia Gravis and POIS
« Reply #4 on: April 04, 2018, 08:25:21 PM »
@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


« Last Edit: April 05, 2018, 07:48:54 PM by ThisType »

ThisType

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Re: Myasthenia Gravis, CMS, and POIS
« Reply #5 on: May 01, 2018, 09:43:43 PM »
Update:
After further research and study, I'd say that what I'm seeing as a function of POIS has symptoms closer to Congenital Myasthenic Syndrome (CMS) than MG though the two are typically clustered as the symptoms are similar.  Specifically, MG is autoimmune and CMS is genetic (not autoimmune) and both are usually related to acetylcholine receptors.

What's interesting is that connecting CMS fits with a number of the other symptoms that people are seeing (swallowing, eye contact, speech slurring, weakness after exercise, tiredness post POIS, difficulty smiling/facial expressions). 

  The benefit to this realization is that there is another body of work out there on the topic.
The chart in http://www.congenitalmyasthenicsyndrome.info/files/lancet-2015-engel-cms.pdf  in table 1 has a list of the types of genetic variations that have been discovered with CMS. It would be interesting to compare symptoms of those with those seen by POIS sufferers.  Ideally the table would be matched to SNPs to then ID if we have related mutations.

would be interested in your thoughts


b_jim

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Re: Myasthenia Gravis, CMS, and POIS
« Reply #6 on: May 01, 2018, 10:53:34 PM »
agreee, Pois may be linked to acetylcholine receptors.
Taurine = Anti-Pois

emirnazim

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Re: Myasthenia Gravis, CMS, and POIS
« Reply #7 on: May 02, 2018, 03:59:39 PM »
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

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




Hello This type


Thank you for your very helpful note that make me aware of existence of disorders so called  CMS and MG

. i took a brief look about these disorders its fit to me the symptomes. but after watching some CMS and GM videos in youtube , i found

them (suffers of CMS  AND  GM) in very worsen versions . for example  if i  consider myself as a  MG  , so  i  can say that i have never
 
had  one week side of eyelid that one is open and other was halfopen . but i can say that most of times both of my eyelid seem halfopen

 i i seem as if i want to sleep and my parents say me that have you need to sleep yet ? ;D  . this halfopen eyes accompanies with deep

sense of need for sleep. i also have weak muscle .because if one person hits me or apply a force toward to me , i can easily be moved

from where i stand . or when i do(give) a handshake with others , i think that they pressed my hand  very stronger than what i do , i

aslo have difficulty in breath taking .  when i was not on any SNRI or  doluxetine , my blood HGB  or  hemoglobin level gets to high level

than normal range .near 17 . i think tahk this rise in HGB level is not reevant with the power of lungs muscles . and it needs to produce

more HGB in order to produce more oxygen carriage (only is my hypothesis) . if i take a hot shower specially at limited size ans small

bathes , i get a very bad feeling like asthma and difficulty in taking breath . also if i run or do a relatively strange act , like running on

cardio machine , i get very soon tired and asthma like situation . i was thinking that this sense of very tire and fatigue may be related to

 heart coronary vesseles , but after i did a Cardio EEG ON THE high rate and stress and running , i couldnt tolerated even till the end of

test and was feeling that i was dying and asthma ,but at the same time test results didnt show any abnormality of heart functions and

dotor said you should have become only tired may be . so i want to ask you or other observers that would you think i have MG  like

or would you reccomend me take a EMG test of muscles and nerves in order to detect MG ? in other word i can not make sure if

am i a MG or at least  MINI MG ? or may be every body has the same feeling like i do ?


you also had said that you use phosphatidyl choline , i coudnt found this product . also couldt found  MYTHELASE  near me at drugstores

 ,   i  only  found , pyridostigmine     and prednisolone  .  could i test this druge instead of   phosphatidyl choline  or MYTHELASE ?


any suggestion

thanks for your comments
« Last Edit: May 02, 2018, 04:08:57 PM by emirnazim »
symptoms:extreme faique-over sleeping-High Blood Pressure-extreme irritability esp day two of O-poor memory and concentration-slow in(going-eating-reaction-driving-task doing)-week muscle-Mood changing-feel better in second O-high saliva-tired and asthma after heavy action or taking hot shower

ThisType

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Re: Myasthenia Gravis, CMS, and POIS
« Reply #8 on: May 02, 2018, 07:55:07 PM »
Hi emirnazim,
You'll need a doctor to answer most of those questions (I can't give medical advice and am not qualified so would hate to steer you wrong).

what I can say is that phosphatidylcholine is found in a lot of foods and can also be found in various vitamin supplements. The easiest way to get it is likely eggs (but don't overcook the yolk as it damages the proteins).   Bulbo has a thread on his egg use on this forum among others.

Some good references on choline and foods that contain them are:
https://ods.od.nih.gov/factsheets/Choline-HealthProfessional/
http://lpi.oregonstate.edu/mic/other-nutrients/choline

If you have CMS or MG, choline may or may not help you depending on the fundamental cause.

hope this helps



ThisType

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Re: Myasthenia Gravis, CMS, and POIS
« Reply #9 on: May 07, 2018, 09:51:12 PM »
Another followup post - given the potential overlap of CMS and POIS, is it possible to leverage some related research funding / grants?

as a note, the MDA funds research on both MG (autoimmune side) and CMS (genetic side)https://www.mda.org/disease/congenital-myasthenic-syndromes.

They appear to have funded research in the area in 3 programs for a total of $850K.  https://www.mda.org/sites/default/files/CongenitalMyasthenicSyndromes.pdf
That seems large enough that it should attract some attention

From the MDA side, it would seem that the opportunity to test against a population (POIS sufferers who see CMS or MG related symptoms) who sees related symptoms regularly and repeatably.

just a thought.

b_jim

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Re: Myasthenia Gravis, CMS, and POIS
« Reply #10 on: May 08, 2018, 01:25:08 AM »
Does someone try sodium bicarbonate. A new study showed its effects on inflammation and maybe autoimmune disease by activation of some acetylcholine receptors and some white cells.
http://dailypost.ng/2018/04/25/drinking-baking-soda-cheap-safe-therapy-autoimmune-disease-study/

I'm taking it 2 times a day for my stomach.
 
Taurine = Anti-Pois

demografx

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Re: Myasthenia Gravis, CMS, and POIS
« Reply #11 on: May 08, 2018, 06:34:17 PM »
Another followup post - given the potential overlap of CMS and POIS, is it possible to leverage some related research funding / grants?

as a note, the MDA funds research on both MG (autoimmune side) and CMS (genetic side)https://www.mda.org/disease/congenital-myasthenic-syndromes.

They appear to have funded research in the area in 3 programs for a total of $850K.  https://www.mda.org/sites/default/files/CongenitalMyasthenicSyndromes.pdf
That seems large enough that it should attract some attention

From the MDA side, it would seem that the opportunity to test against a population (POIS sufferers who see CMS or MG related symptoms) who sees related symptoms regularly and repeatably.

just a thought.

Very interesting, ThisType!

If you can suggest where to send our RFP I would be happy to send them an email from me personally.

You can either post the email here, or PM it to me.

Thanks,
demo


Or, ThisType (and all forum members!), feel free to email the below-RFP yourself if you wish:
https://tinyurl.com/y96dnkmq


« Last Edit: May 08, 2018, 06:59:50 PM by demografx »
Usually have major POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks associated with it.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business.

ThisType

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Re: Myasthenia Gravis, CMS, and POIS
« Reply #12 on: May 13, 2018, 08:32:58 PM »
demografx,
Thanks - I'd think of the concept more as another place that researchers interested in studying POIS may be able to get funding.  Alternately, those already studing CMS under MDA funding might be interested to hear about POIS and at least the Choline effects.