Mayo Autoimmune Dysautonomia Testing Quetstions

[Katybug]

Hi,

For those that have had the Mayo Autoimmune Dysautonomia testing, can you please give me feedback on the following:

1) What symptoms/labs "qualified" you as a good candidate for these tests?

2) Did you have it done at Mayo or at home and sent to Mayo labs?

3) Do you feel it was worth the effort regardless of your results?

4) Did it change your treatment plan?

Thanks for any feedback you can give.

Katie

[peregrine]

Katie, are you talking about the Mayo's Paraneoplastic panel, among others? My doc is having me get blood for that one drawn on Monday when I get back to Seattle, although she says she only wants the antibody against nicotinic ACh receptors so she can look for autoimmune autonomic ganglionopathy; apparently Mayo will do the whole thing only, so I guess I get more results for my expense. She's also sending blood there to look at the TTR gene for amyloidosis (which can cause similar issues). Our plan is to have blood for both drawn here in Seattle, and then Mayo will do the tests and interpret and send the results back. In my case we're doing this because the more common reasons for autonomic small fiber neuropathy (diabetes, HIV, B12 deficiency, and Sjogren's) were negative in the labwork, and she wants to see whether anything else might be going on. We'll see if it's useful :^)

[HopeSprings]

POTS symptoms are why I had the testing done. Blood was drawn at Labcorp and sent to Mayo. My results were negative, but I feel it's worth it to pursue all avenues.

[sue1234]

I go back to Mayo in a few weeks and hope my new neuro will run them, as I'd hate to not do it and find out years from now that something is positive. My new neuro specializes in CNS inflammation, and from reading around on that, could encompass autoimmune issues that attack the nervous system (but of course, MS is the biggie in that field. I have never had any lesions on any other MRIs of the brain, so don't expect to have that).

[Katybug]

Hi Ladies! Thanks for the responses.

peregrine - Yes, it seems that is the same set of tests.

Naomi - Yes, I have been tracking down all leads for years now and I know its the right thing to do, just a little mentally and physically exhausted right now.

Sue - Yes, I would try to take advantage and get as much done as possible while I'm there. You have a nero that specializes in CNS inflammation?? How do you find one of those? The immunologist and I have successfully nailed down my issues to something going on with chronic inflammation and I had to go off the prednisone because I started reacting to it. The first symptoms to return were my neuro and neuro-muscular once the prednisone rally got out of my system. We are going to try the prednisone again at a much lower dose once all my reactive symptoms are completely gone (but currently I have low grade reactive symptoms and my old symptoms are coming back and getting worse daily. )

[HopeSprings]

just a little mentally and physically exhausted right now.

I know, me too.

[sue1234]

Katie, when I originally went to Mayo, I saw an endo. He is the one that is sending me to this neurologist.

[heathmcev]

Glad you brought this test up - I'm having blood drawn for it Monday & sent to mayo. Was it recommended for you to go off any meds or fast for this blood work? I'd hope my neuro would have mentioned this if necessary but he tends not to and I forgot to ask...

(null)

[peregrine]

Mine didn't say anything (and I'm having the draw Monday too! we can think of each other, or something), so I'm guessing no. She was pretty good about telling me very carefully the going-off schedule for my meds for my TTT, so I think she'd remember.

[ramakentesh]

its a pity they dont look for more - 1/2 the patients tested with CFS had autoantibodies against M1 muscarinic receptors. Sjorgens Syndrome patients with autonomic disfunction often have autoantibodies against M3 muscarinic receptors. It is possible that mestinon works for some for reasons other than a3 nicotinic receptors.

[sue1234]

I totally hear you Rama on that.

[peregrine]

Yeah - my doc says that she's only interested in one test in the paraneoplastic panel, but it will be interesting to see the results (and I want to know what's on that panel!).

[Katybug]

peregrine - I think all the tests in the first large block on the algorithm flow chart are probably in the initial panel and then they decide on additional tests based on the results from the first set. At least that's what it looks like on the flow chart.

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

rama - I agree with you. You would think one of these docs would have put a comprehensive list together by now of tests that should be run (or at least considered.) Maybe I'll corner my POTS neuro on that onenext time I see him. I was just telling my friend that I think he's done/tested for everything he knows how to do but that doesn't help me a whole lot. He did basic autoimmune bloodwork (ANA, SSA, SSB) but that was it and even ordered the wrong test to recheck my C4a (ordered just C4). It was the immunologist that ordered the correct test.

dizzyde/peregrine - I think I would put a call in to Mayo Labsto check for any prep since they are the only lab that runs some of these tests. Prep may not be common knowledge or even available to local labs without a phone call.

[cma]

Could someone please explain, what is the point of testing, if it's autoimmune POTS or not. Is there some kind of treatment that's different from regular florinef, salt, midodrine, if it's autoimmune?

Thanks.

[heathmcev]

I just called Mayo Labs and was told no fasting was neccessary for the Autoimmune Dysautonomia Eval test. She also said meds should be fine in general, but without knowing my list I needed to refer to my own doctor (which is fair). I'm fairly certain my neuro would have said something, so I'll just go for it.

Peregrine - let me know how it goes & when you'll get results back! I'm going to try and remember to ask how long results will take to come in

[sue1234]

cma, I certainly am no expert on this, as I'm learning about it just as everyone is here. But, from what I understand, if you are shown to have autoantibodies, it's possible that the doctors can do either IVIG treatments or plasmapheresis treatments. They both do something like clean the antibodies out of the system. ANY kind of treatment is hopeful.

[jenglynn]

I keep hearing "plasmapheresis" addressed to me in the forum but it's never been offered by Mayo. Everything they want to o is experimental immune therapies. Is plasmapheresis the one where they take your blood out, clean it by spinning it or something, and then give it up? So almost like dialysis?

Thanks!

Jen

[HopeSprings]

Could someone please explain, what is the point of testing, if it's autoimmune POTS or not. Is there some kind of treatment that's different from regular florinef, salt, midodrine, if it's autoimmune?

I think the treatment approach would be different, like IVIG - not sure what else.

[HopeSprings]

its a pity they dont look for more - 1/2 the patients tested with CFS had autoantibodies against M1 muscarinic receptors. Sjorgens Syndrome patients with autonomic disfunction often have autoantibodies against M3 muscarinic receptors. It is possible that mestinon works for some for reasons other than a3 nicotinic receptors.

I don't think these tests are available beyond a research setting - right?

[Katybug]

jenglynn - Here's a good quicky explanaion of plasmapheresis: http://en.wikipedia.org/wiki/Plasmapheresis

cma - As others have said, testing positive for any autoimmune disease would probably change treatment. I know something is wrong with my immune system but we can't narrow it down with the basic tests. We tried a course of prednisone and know that it helped me feel much better for 2 wks. Then, I had a bad reaction to it so I had to stop. I am trying to find the specific issue in my immune system as that may help us target my treatment. It may be periodic low dose steroids or it could be as radical as IVIg treatment. There are also other treatments in between in that spectrum. I have symptoms that are common in POTS patients that do have some sort of autoimmune issue, so that is why I am pursuing this avenue. It may or may not benefit other POTSies. I have asked my immunologist to take a look at the Mayo info on this testing to try to determine if I am agood candidate for it.