Washington U in St. Louis is considered one of the best. Sorry I don't know close ones to recommend. Be sure to get complete neuro anti-body test, and a pulmonary function test with Maximum inspiratory volumn, maximum expiratory volumn, not normally checked. I would also ask for pituitary and thyroid tests also. If you already know all of this sorry. The electric shock wave tests are done by all of them. Spinal tap, muscle biopsy, and nerve biopsy are also some of the tests that they will do. Good luck gwcurt
Wow I just got back from the Mayo/Minn. I saw and had more tests that I have ever heard of but did not have a Spinal tap, muscle biopsy, and nerve biopsy...do you know why those are done?
I had the tilt table test and the one that checks for sweat along with pulmonary function tests along with several Endocrine tests because my cortisol is low but that is from steroid injections needlessly given in their opinion (still hot under the collar about those)
They found that I have POTS, which was the "missing link" no one here even mentioned even after endless doctors in all fields.....my main doctor at Mayo had me lay down the first day and took my blood pressure and pulse, since it (pulse) was so high when the nurse took it while I was sitting....then he had me sit up and he took it and then stand up and took it again, then sent me for autonomic testing, when I had my follow up he said he was sure that was going on but had to do the tests to be sure.
After all I went through my suggestion is to get somewhere where they look at you from head to toe if at all possible, they found several things that should have been found here with simple blood tests but no one did.
Good Luck (I am in Florida also but am up in the Bay Area)
I am not aware of any autonomic testing labs at UM, but I know that there is one at the Cleveland Clinic in Weston, Broward county Florida. You can look it up on line under neurology department,
Let me know how it goes, I am supposed to have these same tests done, but my insurance does not want to pay for them.
I am unclear what everyone here is referring to as "autonomic testing." Can someone/everyone tell me what tests are being sought or for what purpose?
The type of facility that I commonly refer to as a "full autonomic clinic" is not available at University of Miami, unless it's so well hidden that even they can't find it ... which I will entertain the possibility of, as they were ... how shall I put it diplomatically?? They were a teensy bit ... disorganized ... when I called them on the phone to try to track down whether they had such a department and/or the specific tests I was inquiring about. :-p Maybe I just caught them on a bad day ...
Cleveland Clinic in Florida definitively does not have a "full autonomic clinic" in the sense that I commonly use the phrase, or in the sense that Cleveland Clinic labels their autonomic clinic in Cleveland, Ohio. I know for certain that they have told patients in Florida that their autonomic clinic is only available in their Ohio facility. (Likewise, although Mayo has multiple locations, their autonomic clinic is currently only available in their Rochester, Minn. location. A previous clinic further west has since been closed.) I see on Cleveland's FL site that it lists "autonomic testing:"
but this is extremely vague and we've had no indication in the past that they have any of the rare/expensive testing equipment available at that facility so I'm led to believe this may merely consist of a limited number of (more readily available) tests. I will try to get a hold of them tomorrow to find out what they have specifically. I'm fairly certain it will not include radionuclide hemodynamic/blood volume testing or thermoregulatory sweat testing. Quantitative sudomotor axon reflex testing is also probably unlikely. They may do things such as cold pressor, valsalva, and heart rate variability. I'm not sure about pupillary response testing. And of course they would have tilt table testing. Other tests like transcranial doppler or others that have been popularized particularly in research studies and at research-intensive clinics like the one at Vanderbilt are also rather unlikely to be utilized in their autonomic testing facility.
A spinal tap is not routinely done in POTS/dysauto workups; it would only be done if there were symptoms/signs indicative of something which needed to be ruled out by this test. Nerve biopsies are generally done as a follow-up to a positive QSART or other indications of improper nerve function that may be confirmed upon biopsy (peripheral autonomic neuropathy may be confirmed/quantified through biopsy and this may further point to underlying pathology such as a primary diagnosis causing secondary POTS). A nerve biopsy would likely not be done without some indication on other testing that it is warranted, and that other testing may not even be performed if tests prior to that or a patients particular signs/symptoms do not indicate that those tests are not necessary. (Which is to say, not every dysautonomia/POTS patient needs to have EMGs and/or QSART.) As it is with spinal taps and nerve biopsies, so it is with muscle biopsy; all of this would depend on your signs/symptoms and the results of your testing. Mayo MN is one of the top dysauto clinics for diagnostics, so it's likely that they were thorough. (Though of course no doctor/hospital is infallible and I would be remiss if I suggested otherwise.)
Just got off the phone with CC in FL; they confirmed that they do not have an autonomic clinic like the one in OH. She was unable to give me a list of the tests which fall under "autonomic testing" in their neurodiagnostic lab, but asked me to email her the list of tests I was inquiring about and she could go over them one-by-one and see. Over the phone, they were able to say the following with certainty:
Yes to tilt table testing and transcranial doppler.
No to radionuclide hemodynamic testing/blood volume and quantitative sudomotor axon reflex testing (QSART).
I'll let you know what I hear back about the rest when I do.
Hope everyone is doing well this week. Happy hump day,
While in Rochester I had QSART, my foot is not producing sweat that falls into the "normal" guidelines.
I did not have transcranial doppler, is that a common test with OI/POTS?
I am hoping I did not "fall through the cracks". My main doctor was an internist in cardiology, I was supposed to only be there one week but due to the extensive tests and doctors that were added I extended and stayed a second week. He was gone the second week.
Since things are real time he could see enough of the tilt/table QSART combo to know for sure what he knew day one when my blood pressure jumped 30 points from laying to sitting and another 30 from sitting to standing. With little change in blood pressure.
I did not know what the QSART test was for and until I got the results sent to me I did not know my foot was not producing sweat.
Being very long winded the test was done at Noon on Friday and I saw him at 2.
Are There things I should in your or anyones opinion have done that I did not, having had only the tilt table and QSART test.
Sometimes a special type of biopsy is done as a follow-up to an abnormal Q-SART to help clarify the neuropathy that is present and even quantify it. (This might give a value such as x% nerves remaining. There is another user on our forum, AireScottie, who knows more about this biopsy and can probably tell you more about it than I can. I will send her a message and ask her to tell you about it next time she is well enough to be online.) I know from my personal experience at Cleveland Clinic's dysauto clinic that it isn't necessarily done following *every* abnormal Q-SART; I think they use their judgment as to the degree of abnormality on the Q-SART that warrants the follow-up biopsy (as patients, we may or may not be thrilled about that judgment, but that's another matter).
Trans-cranial doppler is not part of the standard workup, and if a reasonable explanation for your symptoms can be seen from the heart rate and blood pressure (and possibly plasma norepinephrine, if applicable--also only needed in certain cases depending on symptoms) data from your tilt test then this is not needed as I understand it.
Did you have blood labs done as well while you were there? I'm not sure what is routine at Mayo ... do you remember if you had a nuclear medicine test to assess your blood volume? To know whether you "should" have had other tests, it would really depend on what your specific signs and symptoms are and what tests you'd already had previous to your visit to Mayo (as they may not be likely to repeat existing testing). Do you remember if they had you do the Valsalva maneuver (it involves blowing kind of hard into something)?
What did they say in their report as far as results and treatment recommendations? That might also shed some light on things. If you want to discuss this further through private message, that's fine, or we can continue discussing here on the forum. (To send a PM, hover over my screenname in blue at the top of this post and click on "send message" in the drop-down menu that appears.)
I just heard back from CC FL re: their autonomic testing capabilities:
"May 27, 2010 04:17 PM EST
Cleveland Clinic Response for WebMail Request #598399
Thank you for contacting Cleveland Clinic Florida through our website.
The testing we can do: Tilt Table Test (alone), Heart Rate Variability, Valsalva Maneuver, Sympathetic Skin Response, Transcranial Doppler(alone)
Cleveland Clinic Florida"
This is pretty much another confirmation of what we've found time and time again in contacting hospitals all over the country in the hopes of finding "undiscovered" full autonomic testing clinics: truly, the only full autonomic testing clinics in the US are the well-known centers. As surprising and disheartening as it may be, these are very few in number and are clustered geographically close together so that they are not easily accessed for patients in many areas of the country. Our listing of these hospitals is kept on a health page here:
We will continue to phone and email promising leads as they come up in the hopes of locating other diagnostic facilities, and we will update that list should we locate any other hospitals with dedicated dysautonomia clinics (as we have in the past). I'm sorry not to have better news to share.
You always go the extra mile to help, what a lovely and caring thing for you to do. I know from experience, the time and patience it takes to find these things out, and the frustration that comes with explaining these tests to people over the phone whom have never heard of them before.......
You are such a credit to this community and just wanted you to know this xx
Sorry to hear you have been suffering from Dysautonomia symptoms. May I ask what testing you have had done so far? We are here for you if you have any questions to ask and are here to give you our support.
Re:QSART test. I too had low sweat levels in my foot which were ignored at time of testing. You should have additional testing though, especially with a positive tilt test. The autonomic nerves are responsible for sweat production as well as blood pressure regulation. If your sweat production is low, it's a possible indication of peripheral neuropathy. Specifically, if it's low only in your feet and/or hands, it's a classic sign of small fiber peripheral neuropathy, which usually presents in what doctors refer to as a stocking glove pattern. The worst problems run up from your hands and feet. You should ask about seeing a neurologist familiar with SFN and probably have a skin biopsy to diagnose it. A really cheap easy way to check for it yourself is to close your eyes and have someone ***** you with a pin working up from your finger tips and up from your toes. You may feel nothing, or you may feel the pin at all times. The important thing is to note whether sensation improves as the pin goes up your arm or leg. Can you feel the sharp point in your fingers and toes, or just vague pressure? Make sure your eyes are closed, because seeing the pin can trick your brain into thinking you should feel something. If you have decreased feeling in your hands and feet, you need to have a skin biopsy. I don't know if Mayo does them, but I would hope so. Send me a private message if you want more info. I'm not on the computer a lot right now - not feeling too fabulous.
Sorry, pinprick gets autoblocked because of the alternate meaning, and as it's an automated process we can't unblock it on a case-by-case basis. It's an unfortunate case of throwing the baby out with the bath water and I apologize about that. The filter just looks for anything on a preselected list of "bad words" and is unaware of context. Don't try to discuss The **** Van Dyke show either. :-p
Ugh, would forget my head if it weren't attached ...
Hit submit before I remembered to thank you for popping in to lend your expertise on QSART/SFN to this thread. Thanks so much for being our resident small fiber neuropathy expert and explaining about this testing!!! As always, we're so appreciative of your expertise and the time you take to share it with us!
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