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Sandoval made the request as chairman of the state Homeland Security Commission, which met today by teleconference. may have some influence on treatment Rochelle: I was not typed initially. I would love to be able to trace the inter-relatedness of the diseases. I've never seen an immunologist and always wanted to! Or do you have to have targeted, specialized therapy for individual diseases? Eric: Yes, the "good" news is that most of these will respond to corticosteriods, immunosuppressants, and biological agents, but finding the right mix can be a challenge Rochelle: Sad but I have learned to be grateful and if u look at me, I look just fine Dr. I began it about 1 year ago and it now has 36 members since beginning the support group 6 months ago. Peter: l can't sit in a room with an a/c unless l put a blanket over my legs Ed Moderator: But to clarify..all vasculitis patients with sensitivity to temps or cold specifically may be at the level of danger that you're at, correct, Rochelle? Eric: There is a whole "autoimmune battery" that I would run on everyone who has evidence of an autoimmune disease... 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. I am delighted to inform all wayward visitors to this page that we are resurrecting Nevada News Bureau, Inc. The new website will launch on Tuesday, January 17, 2017, on the day of Governor Sandoval’s State of the State address.Following is a snapshot of the front page, but you should click through to see the real thing. Readers, Colleagues, Media Partners & Friends: It is with deep appreciation for your help, encouragement, readership and support over the past three years that I am tasked with announcing the suspension of operations at the Nevada News Bureau.DATE: March 24, 2011 Participants: Ed Becker: PAN Support Director / Moderator Rochelle Ray: Director of Cryoglobulimia Vasculitis Organization Bernie: PAN Group Member Peter: PAN Group Member Dr. Start off with some backstory and tell us about yourself, where you live, family.

Eric Hoy: Immunologist Online Resources: Cryoglobulinemia: Cryoglobulinemia Facebook Page: _____________________________________________________________________________ Ed Moderator: There she is.... Peter: Hello Rochelle Ed Moderator: Welcome to our chat Rochelle Rochelle: Hello, Dr. I think I read from a prior chat that you are an immunologist?

Rochelle: Yes, when I was diagnosed, I was obviously scared. I used to work in the medical field and I love research so I started to do my own. Eric: Yes, both sensitivity to cold (may be Cryo) and sensitivity to heat and sunlight are seen in PAN. The problem is the labs aren't done correctly 7/8 of the time. Eric: yes, there are a lot of bad laboratories out there, but they can learn. They may get concerned that it could be more than discomfort. The lab just needs to know what they are doing with the sample. Thank you all for joining us and I hope you have a good&x2026; WARM&x2026;week. Rochelle: Thank you so very much for this forum, Ed.

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.

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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