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About katieindixie

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  • Birthday 09/10/1965

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  • Interests
    Horses although now I just watch
    Fish...I love my aquarium and pond
    making new friends
    learning about Pots
    enjoying my good days

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  1. Thanks everyone. I think it's probably just the ANS......but wondered if it was some other crazy thing someone had pinned down.......... my skin is very cool to touch when someone else touches me but just in those areas.....I guess it is just ANS and POTS.....THanks you all
  2. I wanted to know if any of you have any of these things and if so have you or your physicians figured them out yet? Freezing cold face, cold nose Cold buttocks and cold thighs cold biceps and triceps I literally feel at times that my face is in a bucket of ice water...... this isn't like Raynauds though...... there is no discoloration and my hands and feet can be warm when these areas are freezing cold........ anyone? anyone? Appreciate any help or input. I've had my thyroid tested and while I can be the lowest or norm or the highest of norm I've never been out of normal range. I do have Raynaud's, but this is different. Just hoping that someone else out there has experienced this and knows what it is. Thanks! Katie HyperPots CVID UCTD APLS
  3. I have it all the time....at the base of my skull..... I'm a hyper pots
  4. I saw Dr. Bioggioni (spelling?). .. I did get diagnosed with hyperadrenergic pots. He didn't really have very much to say about the reactive hypoglycemia which was frustrating. They made me an appt to see Dr Brio or Buo in the diabetes clinic. I do not have diabetes though and have never had an A1C over 5.6. He just didn't seem to want to discuss it at all. Should I have been pushier?? My own GP decided to "symptom chase" for me and gave me Januvia 100 mg which has helped.
  5. I'm really struggling with temperatures lately....I have my first appt with Vanderbilt on Tuesday and can hardly wait I was diagnosed with secondary Raynauds last year (even though I've never had white hands or feet and my hands and feet can be toasty warm, but my biceps are icey cold and calves and thighs are freezing while feet are warm, maybe just a wierd case of raynauds I guess?). I truly spend my days and nights chasing my temperature and trying to make my body happy...I'm either burning up...with a flushing red hot face and having to drink ice water and sweating like crazy and that comes with it's own set of crazy symptoms then (I can literally feel the warmth start down my arms and legs slowly when it happens a wierd feeling...this happens for a bit then in a bit I'm freezing.....where if you touch me you can feel how cold I am...... my vascular system can't decide what it wants to do, but in the last few days my face has joined the freezing cold game....to the point where I literally feel like my eyeballs are cold....anyone else ever have something like this happen?? I was in my neurologists office on Thursday and they were literally perplexed. When they touched my face they said it almost hurt their hands to touch me it was that cold and my body temp was a cool 96 degrees. During the night I didn't know what else to do besides put a heating pad on my face. Though within minutes my body would react to that. It's just kinda crazy........
  6. YES YES YES.....it just started a few months ago and I thought I was just crazy......... it started after drinking a sugared coffee....only 15 gms of sugar in it, but within minutes I was literally so weak and I dropped to a low of 39.... what is everyone doing for it?? I go to Vanderbilt on Tuesday........I can hardly wait to see what they have to say........ Mine I believe is all auto immune related....... I just want so badly to feel better
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