Cryoglobulinemia Community

Meet, discuss & support other patients or families living with Cryoglobulinemia. Contribute to topics, or just share what's on your mind.

Start a discussion now (you must be signed in)
marianne
moderator

Ending Cryoglobulinemia Confusion

Visit our website to read our blogs and learn more about Cryo.

http://allianceforcryo.org/ending-cryoglob...

Feel free to ask your questions in our support group.

marianne
moderator

welcome

Welcome to all of our new members. Can you take a few minutes and tell us about your health journey and let us know how we can help you learn more about cryo. The more we share the faster we heal.

Please take a minute to fill out your profile and write a short explanation about you and cryo.

When were you diagnosed?
What are your symptoms?
Do you have underlying diseases?
Do you have skin rashes or organ damage?
Do you know anything about cold prevention? If so share your useful info with us.

My name is Marianne Vennitti and I'm one of the admins in this group and the Director of the Alliance For Cryoglobulinemia. Please feel free to contact me anytime, here in this group or at
mvennitti@allianceforcryo.org

Also, visit our website allianceforcryo.org. It can be translated.

Be well, Be Warm.

Does anyone have cryoglobulimia and live in Australia

I have just been diagnosed with essential Cryo and can't find a specialist in Sydney who knows anything about the disease.

marianne
moderator

Casa,

I'll check with our patients in our Facebook Group.

When were you diagnosed and what kind of symptoms do you have. There are treatments for cryo.
What type of doctor are you seeing?

martacampabadal
moderator

Hi CaSa,

Have you checked the members section? That section has a world map with the location of all the members who have added their city/country in their profile. You can send them friendship requests and once it's been accepted you can send them private messages as well.

Best,
Marta

More questions than answers

April 2017 I got a positive on my Cryoglobulin Qualitative test. Labs weren't able to recreate results. Trying to find a rheumatologist that specializes in cryoglobulinemia. More issue are popping up so a proper diagnosis and treatment need to be soon.

Tihana
moderator

Dear Stephanie, welcome to RareConnect! My name is Tihana and I work as an online community manager on RareConnect.

Feel free to ask questions or share your concerns with other community members and moderators in this section, where you can also find, as well as to participate in, different conversations.

Also check the other sections of this community to read stories of the families and find interesting articles and information about Cryoglobulin. In the Member section you will find a map with the location of other members in order to find someone near you or send friendship requests.

Have a nice day,
Tihana

marianne
moderator

Thanks Tihana for welcoming our patients.

Stephanie, what type of doctor diagnosed you with Cryo and where are you living?

cryoglobulinemia

cryoglobulinemia

Types II and III have rheumatoid factor (RF) activity and bind to polyclonal immunoglobulins. These two types are called mixed cryoglobulinemia (MC). When the temperature rises, the precipitated cryoglobulins will dissolve in serum again.

6. IX Rheumatic Factor: 270.8
              Immunoglobulin G: 15.30 (ref. Interval 7-16)

15.XII anti-Ro-52 (TRIM 21) antibody (d): very positive (3+)
             (Can be found in mixed essential cryoglobulinemia)

              Antibodies to SS-B (La) antigen: poorly positive (1+)
              Antibody to SS-A (Ro) antigen (d): very positive (3+)
              Antibodies to DFS70 antigen: positive (2+)

30.XII finding an infectious disease clinic: Cryoglobulins are negative

  6. V Awakening from deep sleep, chills and colds: 35.6 *
 
Did the awakening of the deep sleep with the quenching of winter (like lying in the iceberg) is the symptom of mixed essential cryoglobinemia?
Otherwise I'm very sensitive to the cold, but in early fall I wear gloves and cap.
I have terribly strong bones in my hands if I put them under cold water. As a child I could not swim in the sea as other children because after ten minutes I would have been flooded and shaken by the winter.
I am currently working under the diagnosis of collagenosis in obs.

My Sister's Journey

My sister, Martha has NOMID. She and I are in the middle of a journey of discovery.

Please see her ongoing story at nomidnomad.wordpress.com.

My Cryoglobulinemia type 3

Hello,
I am 22 years old and it is 1 year now since I was diagnosed my cryoglobulemia type 3.
Following a sensitivity to the cold, I took a blood test and that was positive.
My symptoms are exaggerated sensitivity to cold (I have difficulty holding a cold vegetable for example, I am often in gloves...) and fluctuating fatigue (fatigue occurs at any moment).
I have vertigo, migraines, I am very quickly breathless.
Is there a connection? I do not know.
I also have a venous insufficiency (varicose veins) which is difficult because you relieve this usually with very cold water, cold creams ...
I am now having different medical appointments to know more.
I hope to find a natural remedy because I avoid the medicines.
I do not know if people are in the same situation as I am.
Hoping for healing at all.

marianne
moderator

Goodness, you are so young to be dealing with symptoms of Cryo but you received a diagnoses very quickly, so it seems. That is to your benefit.

I would think that being breathless would be a caused by the Venous insufficiency, Possibly vertigo and the migraines as well.

Yes cold creams can be a problem. I suggest you keep them in a warm location and have someone apply them once the cream has been warmed in their hands first. Cold water should not be used as you know.

Fatigue is very common with and many other chronic illnesses especially autoimmune diseases.

I commend your efforts for a natural remedy as many of us would like but I do not have suggestions except for Cold Prevention. Many doctors believe in preventative care and suggest that all extremities be covered along with covering your mouth and nose from breathing in cold air. Wearing gloves is not unheard of with Cryo Patients. In many cases it is the norm.

Do you know if you have any underlying disease? Sometimes the underlying disease is treated first.

Does your doctor know how to treat Cryo?

What other doctors are you seeing?

Can you tell me where you are from?

I hope to hear from you soon. marianne

bonjour,

Merci pour votre message.
Je suis du nord de la france .
Pour ma part il semblerai que la crio est apparue comme cela sans raisons du moins pour l'instant.
Mon medecin traitant ma envoye chez un medecin en medecine interne à l'hopital.
J' ai d'ailleur bientot un autre rdv avec celui ci.

marianne
moderator

Fleur,

Please let us know your progress.

Best of luck.