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My main family and where I grew up and all my drs are in Kansas Ed Moderator: You live in Guam sometimes... Rochelle: No, we live where he works at that time, sort of like the military but he works for the FAA. Rochelle: I have to be honest, as I have started the CVO, I believe there are more of us out there than they realize and also REALLY believe because of lack of medical education and public knowledge, that there are many undiagnosed, so I don't think numbers are accurate. I think there is no good estimate of the number of patients, because the disease is not recognized in many cases Ed Moderator: So let's talk about your onset of symptoms. Through lab tests, my doctor found a positive ANA which showed I had autoimmune issues. I mean in they have a connection to temp sensitivity? I cannot swim in a pool without getting dizzy and start to have breathing issues. Rochelle: Yes, I am on the Vasculitis Foundation Board with Ed, Dr Eric Dr. But that doesn't necessarily mean it's Cryo, right? Ed Moderator: So Rochelle let's start the discussion on Cryo (if I can just call it Maybe first a definition would be good. Each Cryo patient had different areas of the body affected than others and different severities Ed Moderator: Incredible Rochelle: Not fun, it can be painful Ed Moderator: What is incidence or prevalence, Rochelle? So, anyways, besides cancer, there is also a connection with Hep C. I was dx with Graves Disease first, an autoimmune thyroid condition. Lost a ton of weight, weak and thought I was having heart issues. Ed Moderator: Are those all three connected in some way. Rochelle: I cannot pick up a cold glass of drinks without it being painful to touch. Rochelle, I actually think all three are the same disease with different symptoms Rochelle: What do you mean by being the same, Dr. I’ve never met anyone who had the number of autoimmune diseases you have Rochelle: raynauds, uctd, Sjogrens, Bell's Palsey attack, Scleroderma (Morphea type) and live do Reticularis Dr. And then I moved to rehab hospital working in the medical billing before being a mom. Eric: Rochelle, have you contacted the Vaculitis Foundation? Great lady Ed Moderator: We have people in our group with PAN who complain about sensitivity to different temps..and cold.

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It wasn't until 6 months later that my symptoms came. The constant going in and out of the fridge is bad long term so I use a towel.

Most drs rarely see 1-2 patients a year with, some with never seeing any. When did they begin and how did they initially manifest.. She ran a ton of different tests to find out things that might be causing it By the grace of God, Cryo was one of them. I cannot go to the grocery store very long at all without having my joints hurt and then getting dizzy and then almost passing out, which my doctor says I could stroke easily because of the sudden cold.

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