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Eric: Ed, there are different types based on lab testing... Eric: The blood actually becomes more viscous, because of the large protein complexes... Ed Moderator: By treating with the standard meds for vasculitis that is a blanket of treatment for all of these different diseases? : I'm fortunate, many people in my CVO group are far worse symptomatic than I am. Eric: But a VERY significant illness, and one that needs proper diagnosis and treatment. I used the internet and found Diane Dike, whom I see you interviewed 2 years ago. She already had an org started and she helped me get the CVO started. Peter: I can tell you from me----pain Yes the extremes in the weather hurt me, Bernie: I do not like to hold a cold can of soda in my hand because it starts to hurt and I sit with a blanket over my lap when I watch the news . Rochelle: I want to get that changed some time down the road. Ed Moderator: So the key question--should all vas patients get tested..only if they develop extreme sensitivity to cold? Peter: Dr Eric are you saying that we all should be checked for cryo Dr. Ed Moderator: You probably said it, but what is the test? I really appreciate the chance to talk about this topic.
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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?