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Does this sound like a form of dysautonomia?

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zwright
zwright

Hello all, looking for some advice. I am a 22 year old male who was just diagnosed with erythromelalgia, which is a rare vascular/nueropathic disorder affecting my hands, face, feet. I also have luekopenia (mild), thrombocyotpenia (70k platelets), and elevated liver enzymes. I have been struggling with these problems for the last 3 years and believe that the erythromelalgia is coorelated to my autonomic irregulataries.

I have a body temp of 96.7 and a resting pulse around 50. I am intolerant to both heat (eryhtormelalgia) but also to the cold. I barely sweat anymore and become fatigue randomly throughout the day. Minor lightheadness and dizziness occur if im bent over or sitting for a while and then i get up but ive never fainted so i don't really think POTS. Occasionly my heart races but i think that is more anxiety than anything. Also i have IBS but i was just treated for SIBO (probably from antibitoic use) and it has gotten much better however my stomach still gets sluggish sometimes but nowwhere near the same as before.

Is there such a thing as multiple system dysautonomia? I thought dysautonomia was the general term but each form only affecting certain mechanism whereas i seem to suffer more from general conditions. I had lyme disease 3 different times in the past.

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4 Replies

  • LongJourney
    LongJourney zwright

    Posted

    You wrote, "Minor lightheadness and dizziness occur if I'm bent over or sitting for a while and then I get up".  When his happens, check if your blood pressure is falling.

    There is a condition called Multiple System Atrophy, which is decribed on the Dysautonomia International website: 

    http://www.dysautonomiainternational.org/page.php?ID=33

    I am not saying that you have this. I am not qualified to give an official answer.

  • kim1111
    kim1111 zwright

    Posted

    I have dysautonomia and there are a lot of conditions inside the dysautonmia term.

    What you have described does sound like you could have it. It affects you heart rate,blood pressure,pulse body temperature also digestive system .

    And you do not have to pass out as feeling faint when standing from sitting is enough.

    See if you can get your doctor to send you to the autonomic clinic which is run by the pain specialist for a table tilt test..

    I was diagnosed 30 years ago and have never been told I have pots but I do have dizzy spells but not full blown attack where I pass out as I have to cut myself or cause pain to pass out.

    I have refux and diabetics now as well as all the other problems. So you do sound like you could have it. There are very good web sites out there that will tell you the symptoms of dysautonomia but remember pots is not the only condition in this lioness

  • kim1111
    kim1111 zwright

    Posted

    On this page look up the yellow box for autonomic dysfunction for waist of the problems caused by dysautonomia. I have vasovagal syncope
  • zwright
    zwright

    Posted

    Thank you for the responses, I appreciate it. I am going to see a neurologist within the next month who specializes in erythromelalgia so hopefully we can figure out an underlying cause.
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