PAN / Vasculitis Chat with Diane Dike, patient with Cryoglobulinemia


DATE: March 8, 2010

Participants:

Ed: Director / Moderator

Diane Dike: Patient

Dr. Eric Hoy: Immunologist

_____________________________________________________________________________

Dr. Eric: Hello, Ed!

Ed Moderator: This chat must be before dinner for you

Dr. Eric: Yes, my chili is simmering on the stoveEd Moderator: Chili without beans I understand :-) True Texas chiliDiane Dike: HI!! So thankful to be with you tonight!Ed Moderator: Hey there Diane. Great you could make it. We'll start in a couple of minutes. This is Dr. Eric Hoy, who is an immunologist and professor and our chief medical consultant and all around good guyDr. Eric: bon vivant, and loved by millionsEd Moderator: Okay, I have someone IMing me who needs help, pardon me for a moment. Talk amongst yourselvesDr. Eric: Diane, I understand that you have cryoglobulinemiaDiane Dike: Yes!Dr. Eric: That's one of the few forms of vasculitis where we find some abnormal lab tests.: Have they determined if yours is type I, II, or IIIDiane Dike: Mixed probably type 3 but it's uncertain for sure at this point http://www.DianeDike.org is the web siteEd Moderator: we'll just talk amongst ourselves, Eric feel free to jump in too. I'm relying on your expertise on this one. I am totally unfamiliar with this disease. So to get started., first tell us about yourself.

Diane Dike: let me start with a little explanation to help:

Cryoglobulinemia literally translates as: cryo (cold) globuli (clotting) neimia (blood). Vas-culitis, often called ―the hurting disease‖, is inflammation in and damage to the walls of blood vessels including veins, arteries and capillaries.Diane Dike:

This systemic inflammatory blood clotting disease intensifies when I get cold, stressed, stand, or sit with my feet hanging down. My type is extremely rare because it‘s primary, while 90% of patients who experience Cryoglobulinemia have it secondary to Hepatitis C and not until after 50 years of age. It can be a precursor to cancers such as leuklymphomas, multiple myeloma (my Mom is battling), and rheumatic diseases. When flare-ups occur clumps of abnormal blood proteins clog vessels-a danger to joints, muscles and organs. The doctor that diagnosed me said they've only had one other case in over 20 years like mine--since mine

Ed Moderator: Dr. Eric...what has been your experience with the disease. How often have you come across it

Dr. Eric: We see 4 or 5 cases a year... I saw more when I was in Chicago. Not like Diane's though... most of ours are associated with leukemia or lymphoma But are those u see ones without hepatitis? Multiple myeloma has a high association with cryo, but usually the MM appears first.

Diane Dike: I wonder if mine will turn into that--my mom is dying of multiple myloma right now. My dad's sister died at 11 of leukemia, his mom an aneurism & father a heart attack... The onset of the disease changed my life forever as pain became my constant companion. At twenty-three, I was one of its youngest victims. In the three years it took to be correctly diagnosed, I lost everything and effective treatment eluded me... Cryoglobulinemia Vasculitis is painful, disappointing and can lead to blindness. I was recently told I have bilateral optic neurophathy and could go blind at any time. Can't treat it the normal way because I have kidney disease

Ed Moderator: Now to clarify...is there a Cryo Vasculitis and just a Cryoglob disease that isn't vasculitis?Cryo vasculitis- Hopkins lists it that way. Inflammation of the small & large vessels is involved.

Diane Dike: My symptoms include, but are not limited to: weakness, flu-like nausea and aches, rashes and bloody lower limbs, arthritis, neuropathy, itchy skin, ulcerative intestinal tract, sinusitis, nerve damage and eye inflammation. I've had hematuria for the past 3 years--that's blood in the urine.

Ed Moderator: Diane, let's jump back a bit prior to your getting the illness.
Tell us the first symptoms and how it was finally diagnosed. I'm guessing through lots and lots of visits

Diane Dike: On my web page u see my legs full of blood-I had swelling-strange pains-discolorations all over Mine came on at 23 w/ two red dots on the arch of my foot. Then all hell broke loose for 3 yrs. until USF diagnosed it

Dr. Eric: Where were you living then?

Diane Dike: FLORIDA

Dr. Eric: Are you still in Florida?

Diane Dike: No COLORADO But I'll be seeing a specialist to see if at 10 Bechets Disease may have started... I do much better here

Dr. Eric: you must be wearing warm socks!

Ed Moderator: Diane, this might be a dumb question but wouldn't the climate of Florida be better than the cold of CO. Or do you get better care in Colorado

Diane Dike: The cold stores in tee's & shorts caused a flare every time Here I can wear full ski gear-no problem I've had sores in my nose for 13 years of being here- I think it's rotting away inside. It wakes me up often so I sleep under a head blanket-that seems to help

Dr. Eric: Have you been tested for other forms of vasculitis?

Ed Moderator: Is there any aspect of Wegners connected to it. I just thought about it when you described the nose and sinus issue

Dr. Eric: I thought of Wegener's too

Diane Dike: NO. It seems very similar!

Dr. Eric: you probably should have a full workup... cryo can present as part of other forms of vasculitis

Diane Dike: My symptoms include, but are not limited to: weakness, flu-like nausea and aches, rashes and bloody lower limbs, arthritis, neuropathy, itchy skin, ulcerative intestinal tract, sinusitis, nerve damage and eye inflammation. Although I have a high tolerance for pain, the exhaustive list of sensations can get the best of me. ... I've exhausted western medicine and tried countless holistic approaches, culminating in a four-week stay at one of those clinics in Mexico you sometimes read about, which almost killed me.

Each year takes its toll and I wonder how long my body can go on.

Ed Moderator: Diane, how is it diagnosed? What test do they do. I'm guessing a blood test

Diane Dike: USF finally did the cryo test-very important to warm up the items used in taking the blood-this is a common problem that I have

Dr. Eric: Ed, the screening test is the easiest test in Laboratory Medicine... you put the patient's serum in the refrigerator. : But the taking of the blood can cause me trouble if things are not put in the incubator--my vessels tighten around the needle & usually stop--hospitals or dr. offices r usually cold already

Ed Moderator: Diane, talk about what treatment you've received before...now getting. You told me that you can't take traditional meds such as Imuran

Diane Dike: Right! The kidney doc says no way--they never seemed to help-in fact they seemed to aggravate the vasculitis! My dog Gracie's been the best med. without negative side effects!!! She creates heat for me that I can't create for myself! AMAZING!! I nurtured her back to life and she rescued me in return by becoming my service dog. She's trained to stay against my heart and creates life-saving heat that my own body cannot. She allows me to participate in life more safely Gracie was abandoned at an animal hospital. With two broken legs, broken ribs, and a busted tail. They didn't know if she would ever recover or walk again.

Ed Moderator: Well, I do believe in the power of pets and animals. You're blessed to have her. I was thinking of meds or specific treatments too

Dr. Eric: First, keep warm... second depends on the other disease(s) associated with it. Cryo is almost never seen alone.

Diane Dike: I sometimes take serequel to put me out of my misery & pain so I can sleep I was also on medical marijuana. : Gracie and I…we've been a one of a kind team for coming up on 7 years! I haven't been hospitalized over night since rescuing her--the heat she puts out. She's on my lap right now-working.

Ed Moderator: That's great. So to clarify Diane, you're not able to take the traditional vascultiis treatment

Diane Dike: We've written a few books... Gracie Comes Home & God Made Only One of Me. Both encourage people who have struggled to live a victorious life no matter what they can overcome.

Ed Moderator: I would love to add those to our library of books, Diane. I'll be in touch after this chat So tell me...you got this disease and then how did it inspire you to do greater things?

Diane Dike: It has given my life purpose & made it fruitful--even from my bed here at home - just like being able to talk w/ u fine gentlemen!

Ed Moderator: What was the greatest loss for you personally

Diane Dike: Well, at first-I lost everything. Homeless, suicidal-in the funny farm... wishing only for death to put me out of my misery! But then I had a transforming moment--& regained a hope & JOY!

Ed Moderator: And this was brought on because of the symptoms, you were in so much pain?

Diane Dike: Loss of my dreams-children, athletic life. My marriage & family. Right-- I lost my way! Like in the middle of a vast & stormy ocean--fighting for my life-no one knowing how to help me or understanding....

Ed Moderator: So you had all of these mysterious symptoms and you were trying to figure out what and why it was happening?

Diane Dike: No answers for 3 yrs. no one understanding-weird symptoms-in the hospital all the time... Cancer- people know what to do-chronic, rare diseases mystery- it’s more like…huh? the pain is constant & overwhelming--but I've learned to deal with it through Second Chance with Saving Grace--thinking of others more than myself!

Ed Moderator: Did getting a name for the disease or affliction make it better... once you leaned it was REAL

Diane Dike: a little but it also gave me the license it seemed to ruin my life. To walk away from all I'd loved. To lose all that was important. To make decisions for my husband at the time that were not mine to make : DEPRESSSSSION!

Ed Moderator: People in our group often say the disease divided their lives in half. By that I mean BD and AD ...before disease and after disease They aren’t the same person

Diane Dike: Good point. I like that... hmmm

Ed Moderator: How did you change after your diagnosis?

Diane Dike: I had to finally mourn the old me... to be able to move on & accept the new me. learn to love myself which I'd realized I never really did-- didn't accept myself so a whole new world... At first I was a bi-polar mess. Rollercoaster ride is the best description

Ed Moderator: Did you ever struggle with family and friends maybe not understanding what you had was real?

Diane Dike: Completely!!! Still to this day most don't know how to say the name of the disease or what it means. That’s partly why I wrote the books! When I started using the wheelchair one of my friends wrote me the most unkind email. Saying she never thought I'd give up. I actually started using the chair so I could KEEP participating in life--more safely! It's so sad... How do we help people understand the HELL of it all? Seems only if they have to experience it--then they are too tired to help

Ed Moderator: Or when you get the classic rare disease patient line that you don’t look sick. That's insult to injury for the rare disease patient isn't it?

Diane Dike: YES it is!! RIGHT!

Ed Moderator: A universal thing in the rare disease community. We hear that so often don't we Dr. Eric? Not only people but heck...doctors too!

Diane Dike: Doctors can be the worst!... very sad. When my friends get the flu, they say oh I don't know how u deal w/ this all the time., but then they get better & forget--the daily trial of it all... If not for my faith—I don’t know how I would do it

Ed Moderator: Well, we're getting in the home stretch. You have quite a story to tell.

Diane Dike: THANK YOU!! My dream now is to help as many people as I can for as long as I'm able!!

Ed Moderator: So, surprise, surpise...Discovery Channel calls you

Diane Dike: RIGHT!

Ed Moderator: that must have been something out of left field. what did you think when that happened

Diane Dike: Sweet Cindy Weber (who was also featured on an episode) alerted them to us--the rest is history--over 100+ hours of filming, down to 22 minutes to air tomorrow night I was glad-- We can't help & improve awareness if people don't know about us. So I'm all for sharing my story-honestly & authentically

Ed Moderator: What do you hope comes out of this show. My personal feeling is that shows like this are great,...BUT it doesn't help to preach to the choir. in this case the rare disease patients. it's critical that family friends and caregivers see these shows and maybe GPs

Diane Dike: to help, encourage & bring hope--If I can make it-U CAN TOO . show the choir that there is more to life than feeling sorry for ourselves & doctors appointments--but others need us too

Ed Moderator: excellent point, Diane. it sounds as if you have really made a difference

Diane Dike: we still can live a victorious life full of meaning, purpose & IMPACT! I'm giving it ALLLL I've got! 4 SURE!

Ed Moderator: and raised awareness. I can sense you are a very dynamic , positive person

Diane Dike: My sweet husband of 13 years is a saint & helps to make. my dreams come true!!

Ed Moderator: what do you say to those patients who are in deep depression. overwhelmed by their illness

Diane Dike: Get over yourself--start thinking of others & seek ways to help the least of these--that's the secret to happiness!!! I know--cause I leaned it & live it each day!! It's not about me or this broken body--it's about others-shinning a light into the darkness

Ed Moderator: Well, I would say what Dr. Eric said too...Please be sure to make sure there may not be another vasculitis involved'

Diane Dike: right! : I HATE going to the doctors

Ed Moderator: That could be key

Diane Dike: so I've been avoiding it... but it's time to keep better check on things!

Ed Moderator: What is your biggest concern about going to a doctor

Diane Dike: I just don't know since my kidneys can't take much what else I can do... : it EXHAUSTS me! All the questions, waiting, variables, needles, nurses & specialists who don't get it or know...UGH! it's the worst--even when I tell or ask or teach--the lab still puts me in danger poking me w/ cold stuff... New doctors & I have to go through EVERYTHING all over again--can't they just read the 5 in file.

Ed Moderator: Well, I will encourage everyone to watch Discovery's Mystery Diagnosis and your show is on tomorrow night at what time? 10 pm EST. The Woman Whose Legs Turned Black What a great title! Just kidding. arggh ya! So dramatic

Diane Dike: I had a miracle when they came back to normal color-nothing short of a miracle!!


Copyright The PAN Support Network 2012
Sitemap PSN