How To Get Post Ganglionic Autoantibodies Tested?

[jangle]

I'd like to see if I can get a test for the various known autoantibodies that can cause dysautonomia. However, due to the fact that virtually no physician in my area has heard of POTS, I'm not sure if these tests can be done in local labs.

I was wondering if anyone has any experience with this?

My internal medicine doctor said she would be willing to refer me to Dr. Grubb. I'm sure he would do the testing, but I'm also sure his wait list is >6 months.

[sue1234]

I am hoping a new neuro I am going to in July will run the dys. autoimmune panel. I am bringing all the info about it.

I was watching the video that Mayo made about Autoimmune Dysautonomia Evaluation, and wondering why in the world are doctors not testing us for this??? Especially for those that have a life-altering version, such as the ones that can't leave their home? Why in the world wouldn't that test be somewhat hopeful in ruling out a cause that has stopped their lives in their tracks??

http://www.mayomedicallaboratories.com/articles/hottopics/2011/02-auto-dys-eval/index.html

When you get to this link, press "View this presentation". It is only 11 minutes long.

[HyperPOTS8]

Quest diagnostics can do it or your home lab should be able to do it as a send out to Mayo.

[jangle]

Ya that's what I was wondering. I'm going to my internal medicine doctor, I'll ask if she knows how to set up such a lab.

I saw a study recently that up to 15% of POTS patients have the post ganglionic ACHR autoantibodies. That seems to be a big one, also there is speculation that the autoantibodies can be in the nerves (not in serum) and so wouldn't show up in a blood draw.

Of course this has probably been discussed ad nausem already.

[HopeSprings]

also there is speculation that the autoantibodies can be in the nerves (not in serum) and so wouldn't show up in a blood draw.

Now that's interesting. Where did you read or hear that? I'd just bring a print out of the panel from the Mayo Medical Labs website and ask your Dr. if you can have it done. I brought my prescription to LabCorp, had blood drawn there and they sent it to Mayo. Link if you need it:

http://www.mayomedicallaboratories.com/test-catalog/Overview/89904

[jangle]

also there is speculation that the autoantibodies can be in the nerves (not in serum) and so wouldn't show up in a blood draw.

Now that's interesting. Where did you read or hear that? I'd just bring a print out of the panel from the Mayo Medical Labs website and ask your Dr. if you can have it done. I brought my prescription to LabCorp, had blood drawn there and they sent it to Mayo. Link if you need it:

http://www.mayomedic.../Overview/89904

It's in this article, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2637993/

It would seem to explain why some members here responded positively to prednisone or other autoimmune treatments.

[HopeSprings]

"AAG has also been known as acute pandysautonomia, autoimmune autonomic neuropathy, idiopathic autonomic neuropathy, or subacute autonomic neuropathy. Ganglionopathy is the preferred term because experimental data indicate that the primary pathophysiology of this disorder affects autonomic ganglia rather than damage to autonomic nerve fibers."

Thanks Jangle. This is interesting to me because the pathology report from my skin biopsy says, "similar pattern of denervation could be seen in ganglionopathy..." If only they could test the tissue for this antibody. I've had the blood test twice and it was negative. I feel like without pinpointing the cause I'm stuck in this untreatable situation. And the way they describe AAG starting acutely and then leveling off, but patients stuck with some dysautonomia - that fits for me. Let us know if you get the test done.

[HopeSprings]

Ok, so now you got me thinking about this again. Here's another article by the same people comparing seropositive vs. seronegative AchR autonomic neuropathy patients. So testing negative definitely does not rule this out.... wow.

CONCLUSIONS

Although a positive result in ganglionic AChR antibody testing is useful diagnostically and guides specific treatment strategies, some seronegative patients have a clinical course and features that are compatible with AAN. Furthermore, some individual seronegative patients respond to immunotherapy (P.A.L. unpublished observations). The frequency of idiopathic autonomic neuropathy will likely shrink as other autoantibody specificities and neuronal antigen-specific effector T lymphocytes are discovered.

http://archneur.jamanetwork.com/article.aspx?articleid=785281

[jangle]

Ok, so now you got me thinking about this again. Here's another article by the same people comparing seropositive vs. seronegative AchR autonomic neuropathy patients. So testing negative definitely does not rule this out.... wow.

CONCLUSIONS

Although a positive result in ganglionic AChR antibody testing is useful diagnostically and guides specific treatment strategies, some seronegative patients have a clinical course and features that are compatible with AAN. Furthermore, some individual seronegative patients respond to immunotherapy (P.A.L. unpublished observations). The frequency of idiopathic autonomic neuropathy will likely shrink as other autoantibody specificities and neuronal antigen-specific effector T lymphocytes are discovered.

http://archneur.jama...rticleid=785281

Very exciting, especially as I was reading the discussion they mentioned that these type of auto antibodies seem to interfere more with the parasympathetic nerves (the ganglia) than they do with the sympathetic nerves (the adrenergic nerves). This is reflected in my own lab results which documented that I have parasympathetic dysfunction, and I likely have hyperadrenergic activity. This is because the parasympathetic nervous system normally inhibits the sympathetic nervous system, so if the parasympathetic nerves (ganglia) are dysfunctional, then you'll get an overactive sympathetic system.

As for the specific autoantibody the ACHR might not be the relevant one to POTS, although it has been shown that those with lower levels of ACHR are the ones who get POTS instead of the full blown autonomic failure.

In my own case I do think there is an autoimmunity issue going on. I have a positive ANA (1:80) which is admittedly small, but I also have Raynauds.

Now seriously, what are the odds of having Raynauds, a positive ANA, and autonomic dysfunction and not having some type of autoimmune issue going on? I seriously doubt it.

[HopeSprings]

As for the specific autoantibody the ACHR might not be the relevant one to POTS

Well, I hope they're looking for our autoantibody. POTS preference for women I think should make Doctors suspicious of autoimmune.

[sue1234]

I have had an ANA at 1:80 and then at 1:160. I've had positive Hashimoto antibodies. I've had positive anti-gliadin antibodies. I've been tested for antibodies to insulin due to my hypoglycemia, but it was negative. And that's just the ones that have been tested. I'm really curious about these ganglionic antibodies.

I too hope they dig more for our antibody. It seems something is going on.

[jangle]

I have had an ANA at 1:80 and then at 1:160. I've had positive Hashimoto antibodies. I've had positive anti-gliadin antibodies. I've been tested for antibodies to insulin due to my hypoglycemia, but it was negative. And that's just the ones that have been tested. I'm really curious about these ganglionic antibodies.

I too hope they dig more for our antibody. It seems something is going on.

Also POTS seems to develop after a virus or pregnancy, classic triggers for autoimmune illnesses. In my case I had minor symptoms of POTS most of my life, but after I fell ill with a long case of bronchitis my POTS became really bad over the course of a few months.

I remember doing an ANA thread a while back and found quite a significant percentage of people had positive ANA's. It's said something like 5% of the general population will have a positive ANA, so it would seem unlikely that we would randomly have so many positive ANA results.

[ramakentesh]

Dr vernino claims that up to 25% of pots patients test positive for a3 nicotinic receptor auto antibodies in serum. Autoantibodies cannot travel through nerves, but inflammatory cytokines can inflame tissue targets while beingnormal in serum. Aag is associated with pupil abnormalities and autonomic storms. Usually monophasic or relapsing/remitting.

Dr vernino also suggests that beta 2 receptor anti bodies may occur in pots. Other sights are being investigated

[jangle]

Dr vernino claims that up to 25% of pots patients test positive for a3 nicotinic receptor auto antibodies in serum. Autoantibodies cannot travel through nerves, but inflammatory cytokines can inflame tissue targets while beingnormal in serum. Aag is associated with pupil abnormalities and autonomic storms. Usually monophasic or relapsing/remitting.

Dr vernino also suggests that beta 2 receptor anti bodies may occur in pots. Other sights are being investigated

Thanks for the information. Do you have a source I could take to my doctor about the 25% a3 nicotinic receptor auto antibodies?

[jangle]

Well I got my lab to send my stuff to the mayo clinic - im running their autoimmune dysautonomia panel.

[sue1234]

Was it easy enough to get your doctor to order it? I am hoping mine will when I see him.

[jangle]

Was it easy enough to get your doctor to order it? I am hoping mine will when I see him.

Lol ya actually, basically I just took that study that said that 10-15% of POTS patients have ACHR autoantibodies and told her about my Raynauds, ANA, and history

so she sent me to the lab to see if I could get it figured out.

I went to the lab and they weren't very accommodating, but whatevs. I found the CPT codes, called the insurance, insurance gave me the green light got them to open an account with Mayo Clinic, and boom! Got the stuff sent away.

Now whether or not it's actually going to work is another story.

[HopeSprings]

Good for you - keep us posted on results!

[sue1234]

Sounds like a few hurdles!! I could kick myself---when I was at Mayo, I mentioned to the neuro about how I was going to try to get in to see Vernino, since he was only 6 hours from where I live, so I said I was going to have him address all this autoantibody possibility. Well, I get home and call V.'s office to make an appt. I first had to send some recent records, and lo and behold, I did NOT get an appt. He probably looked at that oddly half-normal, 10-minute TTT from Mayo. The lady said he is very busy with teaching and seeing a few patients, and apparently I did not make the cut on the few he addresses. I was kind of stunned. I mean, he looks at autoimmune issues for POTS patients, and, I am a POTS patient! So, I missed the chance at Mayo to have the dys. panel run.

[jangle]

Sounds like a few hurdles!! I could kick myself---when I was at Mayo, I mentioned to the neuro about how I was going to try to get in to see Vernino, since he was only 6 hours from where I live, so I said I was going to have him address all this autoantibody possibility. Well, I get home and call V.'s office to make an appt. I first had to send some recent records, and lo and behold, I did NOT get an appt. He probably looked at that oddly half-normal, 10-minute TTT from Mayo. The lady said he is very busy with teaching and seeing a few patients, and apparently I did not make the cut on the few he addresses. I was kind of stunned. I mean, he looks at autoimmune issues for POTS patients, and, I am a POTS patient! So, I missed the chance at Mayo to have the dys. panel run.

It took about an hour. I didn't like how when I was getting my blood drawn I apologized to the lab tech for having such an unusual request. She previously was trying to discourage me from doing it because she didn't want to have to call Mayo and set up an account. So when I apologized and said I had a rare condition, she smirked and said, "that you or a doctor diagnosed?"

I realize it's pretty weak for me to complain about an off hand comment like that. But honestly I'm just so sick of being treated like a hypochondriac.

The sad thing is, is that actually I really was the one who diagnosed it initially.

[Mytwogirlsrox]

Hey guys, y'all seem knowledgeable about this testing business, so I have a quick question. Can you have a normal ANA & sedimentation rate and still have an autoimmune process going on?

[jangle]

Hey guys, y'all seem knowledgeable about this testing business, so I have a quick question. Can you have a normal ANA & sedimentation rate and still have an autoimmune process going on?

It'd be less likely, but yes it is possible.

[HopeSprings]

Hey guys, y'all seem knowledgeable about this testing business, so I have a quick question. Can you have a normal ANA & sedimentation rate and still have an autoimmune process going on?

I don't know - did those with POTS who tested positive for AchR have positive ANAs as well?

[arizona girl]

I might have been tested for one of those but not the mayo panel. There is no doubt that my pots is a result of autoimmune defects.I had a very high ana many times many years ago was the first marker, went neg for awhile but became positive with the onset of hashimoto. With ana's today they don't just look at the number ratio they also look a type of pattern. The patterns will point to different autoimmune disease states.

I am getting immune modulation in the form of ivig, but there are other biologics now, say for lupus as an example. This area of treatment is really starting to evolve and hopefully will only improve with time. That is good news for the younger ones among us. Northwestern is actually doing stem cell transplants with several autoimmune disease. I know one nurse who's wife got rapid onset schleroderma and last I heard after the treatment it still hasn't come back. Another patient with polyneuropathy was accepted, but insurance issues got in the way.

I do think there is hope for the future.

[RichGotsPots]

Great work I'm planning on getting this soon after I test for my adrenaline levels.. Is there any meds or treatment if we are positive?