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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.

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: There will be pan patients who read this and say they have reaction to cold. Eric: Yes, it's a blood test, and can be done along with all the other tests without any trouble. I have travelled all over the US and that seems to be where I think I can live both $ and temp. Ed Moderator: Well, Rochelle this has been a hugely informative chat.

Rochelle: So unfortunately, I think a lot of people are going around thinking they don't have it when they do. Rochelle: We are trying to permanently transfer to Houston area. warmer than Dallas Rochelle: By far, those few hours make a huge difference!

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