I Had A Sudoscan Yesterday

[Clairefmartin]

So had my first round of autonomic testing by my new endocrinologist yesterday and it was interesting - and I'm a little concerned. I was administered the breathing test, but they had me in my reclined wheelchair, and my BP didn't do much. If my legs had been down, my BP would have gone crazy, as I get symptomatic just from sitting up straight and having my legs down. They didn't want me to push it, and actually nixed the entire 5 minute standing portion (I would have been out in a minute or two). My heart rate did increase, the tech seemed to think it jumped significantly. I do know that I was shaking and felt terrible after. The valsalva breathing gave me childbrth flashbacks

I then had a SUDOSCAN, which is the new fancy sweat test out of France. It supposedly uses ionic response to measure neuropathy and autonomic disfunction. Here's the link: http://www.impeto-medical.com/clinical-research/completed-studies-sudoscan-plus/ . You rest your hands and feet on nickle plates, and the scan only takes 2 minutes.

It came back completely normal according to the tech, which is weird, because I have terrible pain and tingling/numbness in my hands and feet. I asked if it tested for small fiber neuropathy, and she said yes, but that it was hard to diagnose. I thought you had to get a biopsy to test for SFN? I'm a bit confused.

They then took almost 20 (big)tubes of blood, incuding a bunch of testing for endocrine tumors, autoimmune issues, and tryptase (for mastocytosis). Needless to say I'm feeling pretty worn out, and a little worried that everything will come back normal and I will still have no answers as to why my BP and HR are still so crazy 5 months postpartum. Or why I have POTS, which is my real question.

A neurologist from the Cleveland Clinic just moved to the hospital group 2 blocks away from me, I already requested a referral from my cardiologist just in case I get no answers from this endocrine doc. I'm hoping this was just the first round, I was expecting a full autonomic workup, not just the two tests. They did no standing NE, which I have never had and really want. I will ask at my follow up in a few weeks.

Anyways, thats it. I have to get back to caring for my barfing 3 year old with a virus and my infant FUN! (this is why I need to get better!)

Claire

[janiedelite]

I'm sure there are others who can give you more info about SFN, but here is my experience. The small nerve fibers control sweating (sudomotor) and blood vessel constriction (vasomotor). As far as I know, the skin punch biopsy is the best way to detect demyelination of the small nerve fibers. You can have either vasomotor OR sudomotor dysfunction (I sweat fine but have vasomotor problems). I was told that I have small fiber neuropathy after a qualitative sensory test at Mayo, but my sweat test and QSART test were normal.

[jackiemxoxo]

Claire, those are the tests that I had done when I was there. The most important is that breathing test because they can tell a lot from that test. For example, my heart rate overcompensates when it comes to the valsalva maneuver and I am experiencing too much sympathetic output (causing the pupil dilation, tachycardia, etc.) Also, as you go there more you will have comparisons of how you are doing now versus 6 months ago. I think it is good you are checking up with the neuro too though because it cannot hurt to have more opinions. Also, the neuro may be more helpful in terms of treatment. I hope you do get some answers with what is causing all your symptoms and feel better!

[Clairefmartin]

Thanks Thankful I love saying that. I think I'm going to talk to the neuro about the SFN of nothing comes of the test I had. they did say they had a QSART, and they may end up doing it if they didn't see anything.

And Jackie - did you do the whole breathing test? I'm really worried about being reclined - I wanted to push to get the extreme reactions I get when upright (even sitting) so they can Dx me and see how bad my POTS is right now. And did you do the sudoscan thing? Did they find anything? Thanks for chiming in I was going to PM you.

Thanks!

[anaphylaxing]

Claire, glad you're getting a good work up. Hope you get helpful results!

[jackiemxoxo]

Thanks Thankful I love saying that. I think I'm going to talk to the neuro about the SFN of nothing comes of the test I had. they did say they had a QSART, and they may end up doing it if they didn't see anything.

And Jackie - did you do the whole breathing test? I'm really worried about being reclined - I wanted to push to get the extreme reactions I get when upright (even sitting) so they can Dx me and see how bad my POTS is right now. And did you do the sudoscan thing? Did they find anything? Thanks for chiming in I was going to PM you.

Thanks!

Yes, I do the breathing test every time. The first time I came in that is how they found how severe my dysautonomia was, and how it has improved. I understand what you mean about wanting to show extremes. When you discuss the test with them tell them how they did not test you sitting up and standing so they know that. Hopefully it will still show though because you did the valsalva maneuver and everything else. I did the sudoscan once before and it came back normal. I did that test where they hook electrodes to your feet and one of mine came back abnormal but they did not seem too concerned about it. I think it is good they took all the blood tests because they are thoroughly checking you for what could be causing all your symptoms. I hope you do find some answers otherwise keep searching and see that neuro. Hopefully they will tell you how to manage your symptoms which is the most important thing. keep us updated