Cryoglobulinemia Community

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

marianne
moderator

How can we help YOU?

We have new members joining our group each month and we would like to get to know you better and understand how we can help support and educate you about cryo from our experiences.

When you talk to us and share your concerns, either physical or emotional, the entire group learns more and more about living with cryo.

Where do you live? Maybe someone here lives close by and you can meet.

Do you have neuropathy from Cryo?

Are your joints painful or do you have brain fog?

Do you have a rash? If so it might be purpura? It's a symptom and can be quite serious if you are not treated correctly. http://allianceforcryo.org/palpable-purpura/

If you don't have any questions tell us what you have learned about Cryo.

Today in New Jersey it was about 42 degrees and too cold, for me to go outside. I have realized that repeated exposure to the cold brings on my symptoms and NOT just being outside for TOO long. There was a time in my life, living with cryo, that 65 was too cold. But now I'm doing much better. How about you?

Bonjour Marianne,
Désolé pour cette réponse tardive.
En fait c'est mon père qui est malade. Il a 75 ans et il est tombé malade très rapidement.
Il a été admis en neurologie puis en réanimation, en soins intensifs et maintenant à nouveau en neurologie.
Depuis fin novembre il est à l’hôpital. Il est très faible, paralysé des bras et jambes et n'arrive presque plus à manger. Il a une sonde par le nez.
Les médecins ont d'abord paré d'un syndrome de Guillain Barré pui finalement d'une Cryo type 2.
J'ai l'impression que les médecins sont perdus. Ils lui font sans cesse des analyses et nous disent qu'ils cherchent encore...
C'est épuisant pour ma mère qui doit faire 2 heures de route tous les jours pour allez à l’hôpital et essayer de le faire manger.
Est-ce que je peux vous demander combien de temps vous êtes resté vous même à l'hôpital ? Avez vous également été paralysé un certain temps ?
J'espère que vous comprendrez mon mail. J’essaierai de vous écrire en anglais la prochaine fois.
Best regards,
Franck

marianne
moderator

Hello Frank,

I am sorry to hear about your dad, especially at his late age. From what I understand your dad's paralysis is from the GB disease. So far I have not come across a Cryo patient that has mentioned that symptom.

I was in and out of the hospital for blood transfusions, heart failure, and kidney problems but not for an extended period of time and for reasons very different than your fathers. I believe GB Disease can be treated. Do you know if they have started any medications for it?

Does he have organ failure?

Do you have physicians that understand either of these diseases?

Do you know much about Cryo yet? If your dad is on any type of IV Drips or infusion you might ask the hospital to use a warmer. Some medications can not be warmed but it is best to use the warmer whenever possible. It is also very important that your dad does not have ice placed on his body and that he is kept very warm.

Do you know if he was diagnosed with Cryo from a blood test? That is the only way that it can be confirmed that we are aware of.

Do you have any idea what else the doctors are looking for and why?

Our website does have a translate button although I know it is difficult to use but perhaps it will help to learn more about Cryo. Please know our site is being updated and is not complete at this time. http://allianceforcryo.org/

I look forward to hearing back from you and willing to help in any way possible. Hoping others in this group will also reply.

marianne