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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts.

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. › Reply To: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts.

July 3, 2012 at 8:21 pm #2531
Give My Daughter the Shot!
Participant

Hi Dr. Diana,

I can’t believe you just said that. I can’t tell you how many times I’ve cried to friends saying, “How the heck am I supposed to list 157 symptoms!”. I never counted, not by a longshot. I just cannot believe that you said 150 when, for some strange reason, I chose the number 157 and have used it more than once when expressing dismay. Anyway…

God bless you and I can’t wait to see your work published. I think I tried to get too involved over the last couple of days and there is something very wrong with my legs now. I think it’s circulation – and it feels like something is dreadfully wrong with my ‘tail’ (large mass of bones at base of spine). It’s been going on for the past few days now. I’ve been using heating pad but can’t get any warmth/circulation in my purplish legs (mostly from knee and below but the tops are pretty awful too). Then I ‘hit’ the Brookstone foot massager hoping to improve blood flow, a couple of times my legs began to hurt a lot – different hurt – and I noticed that the veins were no longer retracted but distended like worms, it burned, my eyes bothered me a lot, and reverted back to the former state of coldness. My 7 week old hypergranulated wound on my foot also weeps with more circulation. Heart rate changing up, yadda yadda.

The funny thing, is that the cold bottom portion of my body doesn’t match the normal temperature of the top – WITH THE EXCEPTION OF PERSPIRATION UNDER MY ARMS! What the heck!!! Really!! That’s 3 different, unsynchronized regions of my body – and that’s only for temperature!

My legs and back are awful so I’m going to refrain from writing. Sad, because the writing is theraputic for me. I’m not sure what else I’ve ‘done wrong’ this time so the only change is to stay away from typing? off computer? I always wonder what the heck I did to perpetuate this or that. Do I need to learn a new way to sit, stand, breathe! For crying out loud. This is just not good. Like a bafoon, I’ve gone out in HOT weather KNOWING that my heart would GO WILD – hoping that would increase my circulation! No, not a suicide mission – for less than 5 minutes – did it 3 times though. I’m like a clown -trying to restore circulation in my legs. Anyway, I hope I figure it out because I don’t have such a good feeling about it or maybe the next ‘layer of nightmare’ will come with such force that it attracts my attention away. It’s really bad right now though!!

You know, I did go through a time when I felt as though I might have AIDs, though knowing that there was no way I could’ve acquired it. Ever seen the movie, ‘And The Band Played On’? That’s what the my thought was based on. Multitudes of weird, impossible, horrible symptoms. Now, I think of the commercial where it says that “2 pills per day cost .40” and dream of being able to manage myself that way. Sick as it sounds, I have a sneakin suspicion that it might actually be much easier to have AIDs! Isn’t that horrible that I would think that? or is it?

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