Ganglionic acetylcholine antibodies (gAChR)

[Sea otter]

Has anyone been tested for ganglionic acetylcholine antibodies - gAChR? 

I was referred to do testing. My neurologist said that some patients have elevated gAChR antibodies for some reason. Is it worth checking?

[Jyoti]

I have not been tested for these, @Sea Otter.  But I am curious about both why you referred to d the testing....  Was there anything particular to you and your health that prompted it? Of was the neurologist just checking to rule out perfunctorily?  

Also...if  you do get the test, I would be really interested in your results.
 

[Sea otter]

@Jyoti Neurologist said just that some POTS patients have elevated those antibodies. Maybe this is "normal" test after diagnose because I know some other POTS patients that were also reffered. I am from Europe. I have heard there is some possible connection with those antibodies and POTS and also with AAG (autoimmune autonomic ganglionopathy). 

If you are interested please see following link related with those antibodies and AAG.

https://www.dysautonomiainternational.org/page.php?ID=124&fbclid=IwAR3Ket7PBGRXBTAaNiOKn4R40ZNynad0DRxsKWr5eBKOaEDiOaQmOSsqwgM

Also link about acetylcholine receptors where those antibodies were also mentioned.

https://www.sciencedirect.com/science/article/pii/S1043661823001469?fbclid=IwAR2gaZyQrwg26hUnIsvGcHKtN8-Xr-ZThh4y03soNrCw3btypYPC6g6sbSY

 

 

[Jyoti]

Well, dang, @Sea Otter.  I WAS tested for gAChR! And negative. Thanks for the lesson.

[Sea otter]

@Jyoti There is too much things to follow, we can't remember everything. 😊 Thanks for sharing. 

[Jyoti]

Thank you!  I had the neoplastic antibody panel a couple of years back and was just pleased it was negative.  I guess at the time I looked at the specifics, but over time, it faded into just one of those things crossed off the list.  But it was good to go back and examine the individual assays.  

Do let us know how it goes if you take the test.

[Sea otter]

My opinion is that this test is more for doctors and researches. And I would have to pay for it. As I read everywhere it says this can be connected with POTS but needs more researches. I wish they know something more about it, then it would made more sense to do it. 😊

[MikeO]

i had a conversation with a Gal on the STAT facebook page she tested positive. short blurb from her "Autoimmune Autonomic Ganglionopathy (AAG), a rare form of Dysautonomia"

she said that hypotension and OI are symptoms of this.

[Sea otter]

@MikeO thanks for the info. 

[Sea otter]

@Jyoti I have test results and want to ask you something about it. Can you please check your result, if it says negative? I will send you private message with my test results so you can see. Thank you. 

[Jyoti]

@Sea otter--I am going to leave you an answer here so if it is ever of value to anyone else it will be visible.  I was tested for: AChR binding Abs, AChR blocking Abs, and AChR modulating Abs.  Looking at the results again, I am interested to see that my blocking antibodies were on the border of borderline.  Yes, they came in negative (0-25) at 23.  From what I have read, the blocking and binding are often both present together.  My binding look very low normal, so ....?  Yours were measured on a different scale (US/Europe) but you were thinking that perhaps there was some significance beyond the usual brush-off?  

Also, I find it of interest that the only med which has worked for me (and I have tried a good handful) is Mestinon, a cholinesterase inhibitor--it stops the acetylcholine from breaking down too quickly.  Or that is my lay understanding of it.  Which would kind of make sense (???) if I have (some, just enough to qualify as 'positive):

• Blocking antibodies may sit on the receptors, preventing acetylcholine from binding. 

I do not have a biochemically adept mind, but that sounds to me like they would prevent the acetylcholine from doing its job.  

Do you know if you were tested for each of the three separately?  

Check this out: https://www.testing.com/tests/acetylcholine-receptor-achr-antibody/ 

I just want to add that I have seen numerous situations where blood tests looked ok--in the normal range--and yet were not normal for me.  (For instance, the normal range for potassium tends to be from 3.5-5.3 and I get symptoms of low potassium when my blood levels drop to 4.2.)   If '1' is at all borderline in terms of range, I would see if there is a way to investigate further.

[Sea otter]

@Jyoti just few minutes ago I saw you have different scale in US. So mine are negative according to US scale, I have checked. Thank you so much for reaching out and clarify. 

I was tested also for n-ACHR which came back (slightly) positive, but noone knows why they are positive. 😊 MG was excluded.