Jump to content

Search the Community

Showing results for tags 'SFN'.

  • Search By Tags

    Type tags separated by commas.
  • Search By Author

Content Type


Forums

  • DINET Forums
    • Dysautonomia Discussion
    • Information and Announcements
    • Chit-Chat Forum
  • General Discussion

Categories

  • Member Stories
  • Information Resources
    • POTS
    • MSA
    • PAF
    • NCS
    • Links
    • Studies
    • Video: Living with POTS
    • Newsletters
    • EDS
    • Dysautonomia, Disorders, Diagnostics & Info
  • Living with Dysautonomia
    • Mental Health and Chronic Illness
    • Service Animals
    • Work and Disability
    • Technology and Education

Categories

  • Dysautonomia, Disorders, Diagnostics & Info
  • POTS
  • Video: Living with POTS
  • NCS - Vasovagal Syncope
  • PAF
  • MSA
  • EDS
  • Newsletters
  • Studies
  • Links

Find results in...

Find results that contain...


Date Created

  • Start

    End


Last Updated

  • Start

    End


Filter by number of...

Joined

  • Start

    End


Group


AIM


MSN


Website URL


ICQ


Yahoo


Jabber


Skype


Location


Interests

Found 1 result

  1. I had my hopes all high for this visit today, and as always, was let down. They did not even stand me up the other week for my breathing test (he called it as CANS test), and I told the tech that I needed to be stood up to see my symptoms - but she didn't want me to faint, and said they would still see what they needed to while reclined with my feet up in my wheelchair (bull!). So all they saw was tachycardia. The PA and doc were annoyed, but I had to push for explanations and lab result numbers. They now have to re-do the test correctly, and will be drawing (at my instistance) standing catecholemine levels - norepi, dopamine, etc... to test for hyper POTS, finally. All my neuroendocrine stuff came out normal, they said I have NO peripheral neuropathy ( is that the same as SFN??? or the autonomic neuropathy?) based on this new Sudoscan test. They didn't think I needed a QSART, or any other tests until we do the CANS breathing test again. All my autoimmune tests came back negative (I'm waiting on the list of what was tested), my MRI (without contrast) was normal for structural abnormalities, which is good. I asked about having another MRI with the contrast and they said "lets see if you even have POTS first". REALLY??? ***!!!! I have had POTS for almost a decade - I offered to show it to them by just standing up. They saw it when I stood up last time, and my BP plummeting as well, but I guess they want the formal tests to show it, but they did not order a TTT. The only thing off was my Alkaline Phosphatase was high (I have to look that one up), and my insulin was a little high, but I had just eaten and am fat from being in bed for over a year now so they weren't concerned. They also told me to go see a GI doc ASAP, i have really bad right side pain, and upper chest pain on the right, and when he palpated my stomach I yelled when he pushed on that quadrant (I have been trying to ignore it). So now I have to go get checked for my gallbladder. Along with the searing pain in my esophagus and crazy stomach acid issues. Oh and my trypase was 4.6 - totally normal, and my methylhistamine was perfect they said, so they don't want to pursue MCAD, but are testing me for another autoimmune marker - C1 Astrase - have to look that one up too. I'm so pissed right now if I could muster the energy to move I would throw something. Sorry for REALLY long angry post. This doc is supposed to be one of the best neuro-endocrine docs in the counrty, and the only one with an autonomic lab in town, and I'm losing faith FAST. I'm glad I kept my appointment at Vandi.
×
×
  • Create New...