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Antibody Blood Test?


EarthMother
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I had my tilt table test today. Got up to 155 without drugs, BP stayed fairly normal. Doctor confirmed this is POTS. Ok, now the work officially begins!

My cardio is reluctant to try beta blockers because they could increase my fatigue (I have CFIDS) and I am likely hypovolemic. We are discussing florinef, but for now I am going to take salt tablets and see if I can't bring up my blood volume.

Since I have thyroid autoimmune disease I am particularly interested in the report (on this site) about an autoimmune component to POTS for some people. In specific it talks about an

"antibody to neuronal nicotinic acetylcholine receptors of autonomic ganglia (Vernino, Low, Fealey, Stewart, Farrugia & Lennon, 2000)." and instructs us to have our docs contact:

Dr. Vernino

Department of Neurology, Mayo Clinic

200 First Street., S.W.,

Rochester, MN 55905

verns@mayo.edu

My question is ... has anyone had this test at this lab or know of any other labs who perform this? My hospital staff have tried to reach Dr. Vernino but thus far have been unsuccessful. Any tips?

Thanks! and thank you so much for this board it was an amazing help today as I talked with my doctor.

EarthMother

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The only lab that can do the test is at Mayo Clinic. If your doctor feels the test is warranted, he/she can request it--however, knowing that you have the antibodies currently will not offer you any information that currently leads to any type of treatment.

Same goes for EDS III (Ehlers-Danlos), which I have. Doesn't help me a lick to know I have it--all the treatments are the same as for folks with most other POTS/NCS variants.

Nina

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Mestinon would probably be the indicated treatment if there is damage to the acetylcholine receptors...however, the only person I know who has taken this medication stopped after two days due to the side effects.

Perhaps there are other treatments available...but I've not seen any info. Also, Mestinon's use for ANS problems would be an "off-lable" use. The drug is intended for use with those who have myasthenia gravis.

Have you already tested positive for elevated ANA, a more general sign of an autoimmune process? (I know Michelle and I both share a history of elevated ANA, which stains pink and speckled, the least specific of the staining patterns).

Nina

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I have tested "equivocally" positive for antithyroid antibodies. I was supposed to be re-tested in September but have not gotten back to that doctor yet. I was told equivocally is just or borderline positive, but I have had some weird thyroid test results (high at times and then low other times), so there may be some association there for me.

I really need to get that checked again, thanks for reminding me!!

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No I don't test positive for ANA, I like hifgirl have autoimmune thyroid disease. I have high antibodies against my own thyroid. But with autoimmune thyroid the only thing they seem to do is put you on thyroid replacement -- which I am on -- though I still think it plays a more important role in the overall schema.

Thanks for the feedback on Mestinon -- periodically I have to remind myself to stop searching for the holy grail! :-)

For now my doc said to try salt tablets and see if I can get my blood volume up. I think that's probably a good path .... this all started (again) in August when I lost about 15 pounds, which ofcourse I attribute to my thyroid disfuntion -- everyone else probably just thinks I have an eating disorder.

Presenting the POTS info to my team of doctors will be a big help. Maybe we can all get on the same page and try some things to help the POTS and then take it from there.

Thanks again!

EM

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Hi,

I am new here and just wanted to tell you that if you should go on Mestinon to be very careful. I took the stuff for several months, was never sure how effective it was and then ended up in the ER with shortness of breath, increased muscle weakness and an impaired gait which included taking very short steps.

It took two neurologists and lots of tests to figure out what was causing the problem.

My muscle strength had improved for a while at first. I don't have myasthenia gravis but CFS. The POTS diagnosis is new and I'm still bewildered.

The correct dosage of Mestinon is the tricky part, even for people with myasthenia gravis.

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Hi Earth Mother,

I went off Mestinon but I did it very gradually under the supervision of the neurologist.

I think the Mestinon helped a little at the beginning but the results were not dramatic.

Thank you for your welcome. I'm so very troubled about my situation and realize now that I have had POTS symptoms for many years. I am so glad to have found this and another discussion board but am so "shocked and dismayed" (and sick)that I don't even know where to start with questions.

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Hey there Divine Spark--if you haven't read through the main parts of the DINET site (http://www.dinet.org), that may be the place to start to help you formulate your questions/thoughts. Also there are a number of other very good sites too... like NDRF (http://www.ndrf.org).

Nina :)

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