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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.
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I do recall that it has been shown that postpartum can be possible trigger Dr. Eric: I think they are different manifestations of the same underlying autoimmune process. The labs have been uncooperative in my area to do a correct testing since they changed their procedures. Eric: Rochelle, have you ever had Hepatitis C or B? My mother has Multiple Myeloma so I am being watched for it and I see a hematologist/oncologist. I see my heart doctor every 6 months Ed Moderator: You said an extreme cold can cause a stroke..happens because..how the vessels are reacting? The feedback I get is so amazing that there is such a need for scared people out there Ed Moderator: What type of work did you do in medical field?
I have been unable to get another positive Cryo test since. I use an allergist but we don't have an immunologist in our area. Finding a common thread Rochelle: You are right Ed, all my diseases came on in a flash, I know they have to be related. Rochelle: Cryo can affect the heart due to the thickened blood pumping through it. If the blood thickens enough it can thicken enough to damage the heart. We have not outreached to the medical field yet so I believe we will quadruple that in the next year. I mean, there is a diff between discomfort that may accompany vasc, but cryo is a whole different thing? we could learn a lot form the overlaps, IMHO Rochelle: Yes, recommend your group that has any cold sensitivity to get Cryo lab done. If it is positive, it could save them a lot of organ damage down the road.
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.
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