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maia

Autonomic Testing

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can anyone explain the value of tilt table, baroreflex, biopsy, and sweat testing if it is already known that i have pots, autonomic dysfunction and small fiber neurpoathy?

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Hi! How did you get your diagnoses? What tests were done to confirm them? My diagnosis of Orthostatic Hypotension Dysautonomia & Autonomic Neuropathy was based upon the findings of the tilt table test which I failed miserably and an abnormal QSART along with some abnormal lab work findings. I have had further testing-Fat pad biopsy and full body pet scan to rule out underlying causes, which after everything was said and done-idopathic/autoimmue cause-flu, which I still think it goes back to when I had my gall bladder out in 2005, which I never really bounced back from the removal. The doctor(s) may want you to have them to confirm an underlying cause of your POTS, etc....Good luck :)

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Hi there, I was diagnosed during a hospitalization. I was completely unable to stand or sit up and was on a cardiac monitor for a week. horizontal heart rates were normal or low and anything else was off the charts. i had kub's chatecholamine tests, cat scans of chest and abdomen, and a bunch of labs and 24' urines and was told they ruled out everything else and were left with pots. For a 2 years after that nothing was done to see what kind of pots but other docs ruled out lupus, ms, rheumatoid issues, mri, high res chest ct... im waiting to have a bunch of other bloodwork now by a neuro who wont agree that it is pots but finally conceeded that it might be some sort of autoimmune issue hence the tt, etc... frustrating to say the least, but will those really show what kind of pots or just confirm it? and what is a qsart?

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Hi Maia,

Information on Quantitative Sudomotor Axon Reflex Test (QSART)

The quantitative sudomotor axon reflex test (QSART) is used to assess the small nerve fibers, which are linked to the sweat glands.

QSART is used to diagnose:

  • Painful, small fiber neuropathy when nerve conduction test results are normal
  • Disturbances of the autonomic nervous system, which controls the sweat glands, heart, digestive system, other organs, and blood pressure
  • Complex pain disorders
The test has three parts and measures resting skin temperature, resting sweat output, and stimulated sweat output. Measurements are typically taken on arms, legs or both. A small plastic cup is placed on the skin and the temperature and amounts of sweat under the skin are measured. To stimulate sweat a chemical is delivered electrically through the skin to a sweat gland, but the patient will only feel warmth. A computer is used to analyze the data to determine how well the nerves and sweat glands are functioning. The patient will experience little or no discomfort, but the test could take two or three hours to complete. Tilt Table Test
The results of a tilt table test are based on whether or not you faint during the test.
  • If you faint during the tilt table test and you don't have other symptoms of a heart problem, it may indicate either vasovagal syncope or orthostatic hypotension. But you may need additional tests to determine the specific diagnosis.
  • If you faint during the tilt table test and you have other symptoms of a heart problem, or if your doctor suspects that a heart problem is causing the fainting, you may require additional cardiac testing and evaluation to determine a diagnosis.
  • If you don't faint during the tilt table test, you may need additional tests and evaluations to find the cause of your fainting.

Hope this helps. I would have the tests done to make sure there are no other underlying causes. It can also help your doctor with the course of your treatment. Good luck :)

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Thanks for the info. I think the qsart is the sweat testing they are talking about. Definitely think that is vaulable info, the ttt on the other hand still concerns me. I don't faint. D am not entirely comfortable being strapped into a table until I faint and if they are going to leave me there until I do, I think I will refuse it.

I've heard varying descriptions of its usefulness and that on occasion people not only faint but go into asystole (sp) when fainiting. Not something I want to be subjected to. I also think the breathing test they are talking about doing is to check for vasovagal issues so that would cover that part of the testing.

I forgot to mention this part...I've had 3 echo's, a 30 day event monitor that I only needed to keep for a week, a week long continuous monitoring as an inpatient, a treadmill stress test and a nuclear stress test, so if it's just to confirm OH, and rule out other cardiac issues I still don't see the point in my case. The in-hospital monitor showed one small run of afib which is why the other tests were done-I think-from what I was told all other cardiac issues were ruled out except mvp which I was told i no longer have because the criteria changed-funny huh-and one doc questioned restrictive cardiomyopathy but hasn't tested for it because I wont take the IV gadolinium and the doc who would do the test refuses to run the scan without it-because he won't get paid for it-gotta love modern medicine!

I dont know, that ttt just bothers me...

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Curious - how did you get the small fiber neuropathy diagnosis?

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A neurologist ran an instrument -the metal one used to test reflexes- from my feet up my legs and when he was doing it the metal did not feel cold at my feet but as it ran up my legs it got progressively colder. It was shockingly suprising and when I said something along the lines of 'wow that's weird' and, 'is that why my feet that always felt cold dont anymore', he asked if it was colder on my legs than feet. I told him yes and that it got progressively colder as it moved up my legs and didn't feel cold on my feet at all. This apparently confirmed his impression of my reaction. He said immediately and unequivocally that this is caused by and I have small fiber neuropathy. ... the reflexes were wierd on my legs also, but he didn't mention this to me so I'm not sure if that was part of it or not.

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Ohhh, yes I read about that with SFN - loss of temperature sensation. Makes sense. Based on what I read autonomic neuropathy can be THE cause of dysautonomia symptoms. Then you have to try and figure out what's causing the neuropathy (according to my neuro). I'm still awaiting results of a recent biopsy for SFN.

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Ask your doctor about Alpha Lipoic Acid for the neuropathy. Works for many, did the trick for me. It is used by doctors all the time. Autonomic Neuropathy is often the cause for POTS. The nerves that control vessels and nerves do not work correctly.

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I don't think the TTT explanation from mwise is totally correct.

I have had several TTT's, and I have never fainted during any of them. However, I have had the dramatic increase in HR and therefore I was diagnosed with POTS; You don't have to faint on the TTT to be diagnosed with POTS.

Angela

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My experience is the same as Angela's with the ttt

Caroline

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Hi Ladies,

The information on TTT is from the Mayo Clinic website. Check it out-Results.

BTW-I didn't faint either with my TTT. My BP dropped so low as they began to raise me up on the table at Cleveland Clinic that it was proof enough for my diagnosis.

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Wow, thank you ladies! Ill get some ALA and ask to be worked up for the neuropathy. Are there commonalities with Pots people about what causes this neuropathy? My first thought is that it may be my sugar swings that are supposedly non issues :/ ... Any suggestions as to where to start to find causes or what other causes there could be?

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And... Sallysblooms... when you said worked for me what did you mean? got rid of neuropathy... lessend sx... ??

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I did not have a drop in BP, and that is not necessary for a diagnosis of POTS. The HR increase is what got my diagnosis. My tests were done at Cleveland Clinic. Dr. Grubb concurred with the results.

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Like Angelika_23, my testing was done at the Cleveland Clinic, and confirmed by Dr. Grubb. The TTT test is extremely valuable, despite it's unpleasantness, and relatively non-invasive. It has a value not only in diagnosing POTS, (for which it really is the best method of diagnosis) but in establishing a baseline from which to compare the effectiveness of any given treatment. Were I you, I wouldn't refuse a test that can give a great deal of information, at relatively no risk. It is unpleasant, I will grant that, but they don't strap you down until you faint. I made it through my whole test without fainting. They have a set amount of time you stay in each position, and the only real difference made by fainting is that it ends the test more quickly. The straps are necessary so that if you do faint during the upward tilt, you won't fall and injure yourself. But in my experience, the staff did everything they could to make me as comfortable as possible, clearly explaining each stage of the test. I would do a TTT over a abdominal CT w/contrast (why, oh why, must they torture an already miserable gut with a contrast "cocktail" that tastes like garbage? too cruel!) any day! Hope this helps, and good luck!

Sandy

Edited by corina

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Thank you all for the ingfo! brain fog lately and excitement about answers today so i forgot i posted this and posted another about my apt today with dr. novak. I dont think i would have gone through with it without your comments, and im so glad i did. thank you all!

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this is why i love our forum so much! really happy for you maia!!!

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