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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.
Eric: Pregnancy is a frequent trigger Rochelle: So I now have a long list of autoimmune diseases, darn it! It takes a Cryo patient a lot to learn how to prepare for dressing in layers Ed Moderator: Rochelle..must have really adapted your lifestyle to this particular aspect of the disease. I keep emergency stashes of socks, gloves and blankets with me everywhere I go. Rochelle: I see, so even though the same underlying cause for the process is there, those 3 conditions exist? Eric: Yes, and in some patients we see only Reynaud’s, in others Cryo. Ed Moderator: Rochelle, Eric...about the treatments... I assume typical meds often for vascultiis patients Dr. Rochelle, was the onset after your first pregnancy or the second? My list of diseases is this: Graves (remission), aortic insufficiency, migraines, IBS, dermatographism, endometriosis, intercystial cystitis, cryo, urticaria's, Ed Moderator: stunning, Rochelle! Rochelle: I, was actually a Vet Tech for many years but you'd be amazed at how that translates into the human field.
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?
My name is Rochelle Ray, Director of Cryoglobulimia Vasculitis Organization Ed Moderator: and we have peter from Australia , Bernie from Washington State.
Ed Moderator: You mean the cold temp of the eggs is enough to cause a problem.. Now a warmer climate also brings problems Ed Moderator: How so?
I love ice cream but damage could happen on the inside so I limit it. Peter: l am still mashing it around in my head as to just how hard life would be with Cryo Ed Moderator: And you said because of this you had to relocate to a warmer climate? Not everyone can do this but I was fortunate to be able to do so.
For some reason, I ended up with a bunch more dx after that during a 2 yr. I can't crack eggs with gloves because of the mess so my kids do it. 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. Our chemistry together always fun but in one gorgeous busty neighbor elegant sensual confident seductive and gorgeous girl lets have the feeling.I'm alice and of cours and I use to please most every thing one could forget that p I will satisfy every.5 in pussy only for request no complaints check my prvt asking for freeshow aswell.