Autoimmune Dysautonomia Panel

[lgtaylor100]

Has anyone tested positive on the autoimmune dysautonomia panel that is done by Mayo Labs. If so, what kind of treatment did you receive.

I am in the process now of having my PCP arrange to have this testing done and sent to Mayo. It seems likely to me that my dysautonomia is autoimmune and I am wondering if anyone else has gotten this diagnosis and then what happened.

Thanks for your help.

[derekliz]

What tests are in the panel?

[lgtaylor100]

These are the tests that are in the panel. Here is the site from Mayo that lists them all.

http://www.mayomedicallaboratories.com/articles/interactive-algorithms/adysautonomia/page1.html

Here is the site that talks about autoimmune dysautonomia.

http://www.mayomedicallaboratories.com/articles/hottopics/transcripts/2011/02-auto-dys-eval/04.html

[derekliz]

Thanks for the links.....will print & read. Just starting the search to see if we can find the cause of my issues

[derekliz]

May I ask you why you feel that you have this form of dysautonomia? You do not have do answer if you don't feel comfortable.....I am just curious and learning

[lgtaylor100]

I had an elevated ANA test which indicates possible autoimmune disorders. I presented with signs and symptoms of sjogren's syndrome but both the blood work and lip biopsy were negative (or at least didn't meet criteria) I do have SICCA syndrome ( measurably dry eyes and dry mouth) which is one of the indicators of autoimmune dysautonomia. My PCP has been saying all along that he thinks there is an autoimmune component of what is going wrong with me. I did the research myself and came up with these tests. Right now my doctor is in the process of figuring out how to have this done.

My symptoms came out of the blue a year and a half ago and got to the point a year ago that I had to stop working. Symptoms were bad but stable for a year and now seem to be getting worse. Feel free to reply if you would like to, or you could PM me.

[Annaliese]

I am very interested in this too. I had sudden onset dys after becoming pregnant. I have sore joints and suspected SICCA syndrome. I asked my dr here in Australia to write a script for blood testing(it gets flown to the mayo) and before i have it done i would like to check she has written the correct thing as it costs 4000 dollars. She has written "please send for testing of nicotinic ganglionic acetylcholine receptor antibody". The 89904 autoimmune dysautonomia evaluation that the mayo offers seems to include a lot of things. I am wondering if only the one blood sample is required?

[Annaliese]

Rang Mayo and yes, only one sample is required. Also they said " AChR" was the acetlycholine receptor antibody test.

[Chaos]

I had it run but it came back negative. But my doc at Mayo still says he thinks I have an autoimmune component to my POTS/autonomic neuropathy. My local cardiologist and my PCP have said the same thing. They all seem to think that there are still autoimmune factors that they don't know how to test for yet.

[HopeSprings]

They all seem to think that there are still autoimmune factors that they don't know how to test for yet.

This is what I've been thinking lately. Maybe it's autoimmune, but all the antibodies (?) haven't been discovered yet.

[Annaliese]

So basically you are saying that a negative result is meaningless, ie that it doesnt rule out autoimmune diseases that we dont know of yet? A positive result on the other hand is useful in that it determines the cause. But, after a positive test result, is the only option IVIG treatment?

[Frugalmama]

I had the test done, and it came back negative. It is my understanding, though, that the autoimmune tests don't always show positives when they should.

[Maiysa]

I was diagnosed with AAN (autoimmune autonomic neuropathy) this summer at Mayo in Scottsdale. Although nothing in the autoimmune panel showed up positive, I was told there isn't a test for all autoimmune diseases. But my body will literally attack itself often from anything from food to emotions. I can get welts, sweat, get a burning feeling all over my body and feel quite sick, sort of like my body is being over stimulated and over reacting. I was told I have several unexplained issues, so it's a wait and see game for me. I unfortunately can't take any of the medications for AAN so far and the main medication I can't take because I have had a severe case of valley fever (fungal infection in my lungs) and it can be flared up from the medications that help AAN. It must be a steroid or immune suppressant of some kind. But the doctor is working very hard to help me, but no luck so far. But he is very supportive and trying like I said. I hope and pray that you have better luck than I do with the treatment. Feel free to contact me with any questions. Good health to you.

[icesktr189]

I had 2 positive ANAs tests. I was sent to a rheumy who order more blood work and couldnt find anything. Autoimmune diseases run in my family ( crohns and ulcertive colitis) but I didnt find out anything. My immune system is crazy right now with allergies and I also read it is very common with CFS patients to have a positve ANA come back.I also have EBV so who knows what set mine off.

good luck and I hope you find answers!

[ramakentesh]

This is a hard one, as POTS can be secondary to autoimmune illnesses but it might not be the result of autoantibody destruction of either muscarinic or nicotonic receptors - it might be the result of perturbed endothelial function, elevated ROS or nitric oxide elevations.