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Found 1 result

  1. 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
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