could DYSPHAGIA be a sign of POIS ?

[emirnazim]

Last two month ago i experienced a very strange thing that had never experienced before . on that day when i woke up and started to eat breakfast ,suddenly i felt that i couldnt  swallow  foods like before .it was very painful swallowing foods and very hard . even drinking water or soft tissue foods was very painful to swallow .it was not familiar to me like pain in thorat in time of getting cold . because i could felt the acute pain of swallowing way of ongoing foods  until it earned to the head of stomach.  i surfed immediately at the internet and found that the disorder name was  Difficulty swallowing    or    DYSPHAGIA     .   it was very strange that without any reason or harm of my Esophagus  it could happened . the only thing i suspected was if that night i took a Trasedone ( 50 mg doses druge that boosts  depth of sleep in order to have  a deep but short sleep). but i think i didnt drink enough water to completely swallow the drug into stomach and may be that drug did still remain in my esophagus and made happen an injury inside the esophagus . long story short ,that problem lasted at least 10 day until it healed itself spontineously and fully recovered . now that i became familiar with POIS  , and read that  one of the symptoms were  sore thorat and changing in voice , i wondered that is it sore thorat equal to  Dysphagia ? can dysphagia be the worsen version of changing in voice tone ? i usually experience change in voice quality in bad POISES  but have not experienced Dysphagia before .
i would like hear your points of views .   

thank you   

[Hopeoneday]

Hi emirnazim, it is related to pois at least in me, i cant speak for odhers.
In pois, and 3-4 days after, i hawe trouble to swaloving, i didnt know for years why this is hapening to me. In pois my chest muscule is stifed, breathing and swaloving problems, talking tirednes, bumping heart etc...
Body function tru our brain tru our muscule tru central nervos sistem(with neurotranmiters etc...).

In pois we hawe "inflamation" a lot of stuf disturbed, muscule stiines and tired( read not working properly)- "opioid receptors, neurotransmiters, hormones etc"  if some area in brain who are resposamble for breathing , swaloving ... is disturbed, that things will be afected.
Me also hawe a small hiatall hernia ( it si posible you hawe also), there food is stucked when i swalowing and that make swalowing in pois 10x worse, because esopagus muscules cant work properly couse of pois.(it could be VAGUS nerve "inflamed" and responsibile for this).
I am not a doctor , this is my teory from whot i learned on my self from odhers.
The docs not agre with this couse all this coul be related to anxiety, and they stick to that.
All in all it is wery uncorfordable and afecting to quality of life.

[Nas]

Perhaps throat inflammation, emirnazim ?

[Hopeoneday]

Nas this is not like you get cold , he wrote this.

[ThisType]

it could be worth checking out Congenital Myasthenic Syndrome or Myasthenia Gravis to see how accurately those match your symptoms.  https://rarediseases.org/rare-diseases/congenital-myasthenic-syndromes/#symptoms

Specifically, MG and CMS relate to autoimmune or genetic defects in the Acetylcholine receptors.  I don't believe I have those diseases, but with POIS I get some of the facial and speech slurring effects which may at least relate.  Phosphatidylcholine supplements directly help me.

[Quantum]

it could be worth checking out Congenital Myasthenic Syndrome or Myasthenia Gravis to see how accurately those match your symptoms.  https://rarediseases.org/rare-diseases/congenital-myasthenic-syndromes/#symptoms

Specifically, MG and CMS relate to autoimmune or genetic defects in the Acetylcholine receptors.  I don't believe I have those diseases, but with POIS I get some of the facial and speech slurring effects which may at least relate.  Phosphatidylcholine supplements directly help me.

Thanks TT for the suggestion.  I don't have these symptoms, but I am glad to see that on this forum, we can share our symptoms, see that others have it too, and even have suggestions on a possible way to have relief.   

How much phosphatidylcholine are you taking, TT?   And is it in the form of lecithin?

I hope other members who have shared they have these neurological type of problems will report if they try phosphatidylcholine/lecithin.

[Muon]

I didn't expect someone would come up with this. Yes I'm familiar with it. It pops up and goes away spontaneously. Peristalsis of the esophagus doesn't work properly for that moment. Food causes a lot of friction without the peristaltic movement, even water, and that is why it hurts. It has nothing to do with a soar throat it is something else, it's like there is something wrong with signaling of smooth muscles. I had a day where I could not swallow at all and digestion just stopped, that was quite extreme, it's like the brain decided to stop controlling that portion of the body.

I also had the opposite case where I wanted the swallowing motion to be gentle but it overreacted into a heavy one for no reason at all. I don't think POIS causes this though, it doesn't feel like it. These situations arose moslty during summer seasons.

[Hopeoneday]

Yes muon exectly like this, you described well.
I can tell you that pois couse this in me. And this is mybe cousing pois in me, some unerlaying proces and in pois x10. I think that dispturption of NO nitric oxide is inwolwed in this couse NO afect smooth muscules and vasoconstriction...etc.

I conected that to this - https://www.ncbi.nlm.nih.gov/pubmed/11551239

like Nana sugested, i thinking to my self to tray antivirals but dont know whot combination is the best to tray.

[ThisType]

it could be worth checking out Congenital Myasthenic Syndrome or Myasthenia Gravis to see how accurately those match your symptoms.  https://rarediseases.org/rare-diseases/congenital-myasthenic-syndromes/#symptoms

Specifically, MG and CMS relate to autoimmune or genetic defects in the Acetylcholine receptors.  I don't believe I have those diseases, but with POIS I get some of the facial and speech slurring effects which may at least relate.  Phosphatidylcholine supplements directly help me.

Thanks TT for the suggestion.  I don't have these symptoms, but I am glad to see that on this forum, we can share our symptoms, see that others have it too, and even have suggestions on a possible way to have relief.   

How much phosphatidylcholine are you taking, TT?   And is it in the form of lecithin?

I hope other members who have shared they have these neurological type of problems will report if they try phosphatidylcholine/lecithin.

Hi Quantum,
thank you.  Hopefully we can find a few commonalities and solutions. 

As background, CMS seemed relevant to the initial post given "In some patients with CMS, the weakness is confined to muscles supplied (innervated) by the cranial nerves causing double vision, droopy eyelids (eyelid ptosis), facial weakness,hypernasal or slurred speech, and swallowing difficulties."

For phosphatadylcholine, I use https://www.thorne.com/products/dp/phosphatidyl-choline
which is soy derived (more details on link)

I take one 420mg gelcap within a few hours of release.  I typically take it 1 gelcap/evening as I find that I wake up much sharper the next morning. I do take a 1 day break every 3-4 days so as not to overdo it.

--
notes:
* I should point out that those feeling tiredness from POIS / exercise might fit with an explanation that relates to CMS and choline. 
* I see both facial (hard to smile / "lost your smile") and defocusing of the eyes at times (hard to maintain eye contact) as a function of POIS.
* The fact that these all relate to the cranial nerves and choline is interesting.  not sure where to take that thought though.

[Muon]

Yes ThisType, I share these symptoms like trouble focussing of the eyes, facial weakness, slurred speech. It's is funny you start talking about cranial nerves because doctors suspect the 7th cranial nerve is involved in my Bell's Palsy. My facial muscle tension (left side) is still slightly oscillating, often times the left side of my face will hang down by certain triggers. I have put the phosphatadylcholine supplement you are recommending on my list of things to try. I also wonder if voltage gated channels are involved in this proces.

[ThisType]

Muon, thanks for sharing - its good to hear from others with similar symptoms (though I don't see those of Bell's Palsy).  For me at least, the phosphatadylcholine removes the facial symptoms - hopefully you get some benefit as well.  CMS is considered a form of channelopathy (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3935107/) which I believe is what you're asking in relation to voltage gated channels (though please correct me if I misunderstand). 

[ThisType]

Muon (and all),
Have you or others ever done any of the CMS Genetic Panels that have become a first-round diagnostic?  Some examples from a simple web search:
https://www.genedx.com/test-catalog/available-tests/congenital-myasthenia-syndromes-panel/
https://www.invitae.com/en/physician/tests/03281/
https://blueprintgenetics.com/tests/panels/neurology/congenital-myasthenic-syndromes-panel/

I will likely see what's possible on my next dr's visit and would appreciate any genetic screening that might be relevant to try

Thanks!

[Muon]

Yes I was refering to channelopathy. I've looked into some of these in the past like this one: https://en.wikipedia.org/wiki/Lambert%E2%80%93Eaton_myasthenic_syndrome because of overlapping symptoms, autonomic problems and high temperatures which makes some of the symptoms worse. These are some parameters I also was interested in:
https://www.mayomedicallaboratories.com/it-mmfiles/Autoimmune_Dysautonomia_Evaluation_Testing_Algorithm.pdf

Sometimes I have muscle jerks (need to look up how to exactly specify these) after Orgasm, perhaps due to abnormal polarization. But anyway no I haven't done any CMS related genetic panels. Have you tried Pyridostigmine?

[ThisType]

thanks for the links.  It's interesting to see the medical testing and evaluation tree for autoimmune dysautonomia. it would be interesting to see if they also have a nonautoimmune variant (or if it's just going through the same tree). The closest I've found to that for CMS specifically is (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4520251/).   

Regarding Pyridostigmine - It looks like the side effects may be significant though I suspect is worth it to many.  I haven't tried it, and given success with choline, probably am unlikely to do so myself given the side effects vs. benefit in my case.

I haven't seen muscle jerks, though I do occasionally get mild muscle twitches which I assume are normal for most people.

---
note: found algorithm for MG (also autoimmune) at least: https://www.mayomedicallaboratories.com/it-mmfiles/Myasthenia_Gravis_Adult_Diagnostic_Algorithm.pdf

[Muon]

Btw I have been checked for acetylcholine receptor auto-antibodies. See file Muon 3-2: https://www.dropbox.com/sh/nc2dt6pcwd5xpmu/AACyyDE6uhY1DHn1fAuxw86Ja?dl=0
I have given up on the autoimmune theory though.

[emirnazim]

Hi emirnazim, it is related to pois at least in me, i cant speak for odhers.
In pois, and 3-4 days after, i hawe trouble to swaloving, i didnt know for years why this is hapening to me. In pois my chest muscule is stifed, breathing and swaloving problems, talking tirednes, bumping heart etc...
Body function tru our brain tru our muscule tru central nervos sistem(with neurotranmiters etc...).

In pois we hawe "inflamation" a lot of stuf disturbed, muscule stiines and tired( read not working properly)- "opioid receptors, neurotransmiters, hormones etc"  if some area in brain who are resposamble for breathing , swaloving ... is disturbed, that things will be afected.
Me also hawe a small hiatall hernia ( it si posible you hawe also), there food is stucked when i swalowing and that make swalowing in pois 10x worse, because esopagus muscules cant work properly couse of pois.(it could be VAGUS nerve "inflamed" and responsibile for this).
I am not a doctor , this is my teory from whot i learned on my self from odhers.
The docs not agre with this couse all this coul be related to anxiety, and they stick to that.
All in all it is wery uncorfordable and afecting to quality of life.

Thank you very much HopeOneDay  for your comment and your time to reply me .yes exactely you are rith . i wanted ask you if what remedy has worked for you ? and what type of pois are you would you think?  thanks a lot 

[emirnazim]

it could be worth checking out Congenital Myasthenic Syndrome or Myasthenia Gravis to see how accurately those match your symptoms.  https://rarediseases.org/rare-diseases/congenital-myasthenic-syndromes/#symptoms

Specifically, MG and CMS relate to autoimmune or genetic defects in the Acetylcholine receptors.  I don't believe I have those diseases, but with POIS I get some of the facial and speech slurring effects which may at least relate.  Phosphatidylcholine supplements directly help me.

Thanks TT for the suggestion.  I don't have these symptoms, but I am glad to see that on this forum, we can share our symptoms, see that others have it too, and even have suggestions on a possible way to have relief.   

How much phosphatidylcholine are you taking, TT?   And is it in the form of lecithin?

I hope other members who have shared they have these neurological type of problems will report if they try phosphatidylcholine/lecithin.

Hi Quantum,
thank you.  Hopefully we can find a few commonalities and solutions. 

As background, CMS seemed relevant to the initial post given "In some patients with CMS, the weakness is confined to muscles supplied (innervated) by the cranial nerves causing double vision, droopy eyelids (eyelid ptosis), facial weakness,hypernasal or slurred speech, and swallowing difficulties."

For phosphatadylcholine, I use https://www.thorne.com/products/dp/phosphatidyl-choline
which is soy derived (more details on link)

I take one 420mg gelcap within a few hours of release.  I typically take it 1 gelcap/evening as I find that I wake up much sharper the next morning. I do take a 1 day break every 3-4 days so as not to overdo it.

--
notes:
* I should point out that those feeling tiredness from POIS / exercise might fit with an explanation that relates to CMS and choline. 
* I see both facial (hard to smile / "lost your smile") and defocusing of the eyes at times (hard to maintain eye contact) as a function of POIS.
* The fact that these all relate to the cranial nerves and choline is interesting.  not sure where to take that thought though.

Thankyou very much ThisType .

i wondered if phosphatydilcholine is the same lecitine ? are these two equal ?

[ThisType]

emirnazim,
lecithin and phosphatadylcholine are just about the same thing. lecithin just contains additional things
https://www.swansonvitamins.com/content/encyclopedia/supplements/lecithin.html

[ThisType]

Muon,
Good datapoint to have.  I suspect genetic links on my side (also find autoimmune unlikely).   there are many related snps that aren't tested on 23andme but are done in genetic panels for CMS.  At a minimum from 23andme, I have double mutations in all three of the following, though I don't know if these alone are sufficient to explain:
rs16969968 Nicotinic Acetylcholine Receptors
rs1051730 Nicotinic Acetylcholine Receptors
rs1824024 Muscarinic Acetylcholine Receptors

[Muon]

ThisType,
Could you post this raw data and other things that have been found to this thread?:
http://poiscenter.com/forums/index.php?topic=2684.0

It's easier to navigate for lab results when we have one thread where all the data is located.