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deborahspirit
@deborahspirit

Posts: 2
Joined: Jul 30, 2018

Cryoglobulinemia

Posted by @deborahspirit, Mon, Jul 30 12:09pm

Hello..this site is new to me. Has anyone been diagnosed with Cryoglobinemia? Thank you.

REPLY

Hello @deborahspirit, and welcome to Connect. While I search or other members who have experience with Cryoglobulinemia, would you mind sharing about more about yourself and your experience with this diagnosis? If you are comfortable sharing, how are you feeling and what sort of treatments are involved?

@JustinMcClanahan

Hello @deborahspirit, and welcome to Connect. While I search or other members who have experience with Cryoglobulinemia, would you mind sharing about more about yourself and your experience with this diagnosis? If you are comfortable sharing, how are you feeling and what sort of treatments are involved?

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Good morning, I am 60 years old. About 8 months ago insignificant bruises would turn into bruises engulfing either my entire arm or leg depending on where the bump originated. These would eventually disappear, but then one did not on my right arm and spread into my hand and became extremely painful. I went to my primary care and was directed to a hematologist who suggested I go to emergency and I was hospitalized for five days. This was April 2018. They did not know what was causing this pain and was hospitalized again for pain twice during May of 2018 then diagnosed with cryoglobulinemia, by a medical team consisting of hematologist, rheumatologist, and gastroenterologist, due to hepatitis C. Original treatment vitamin-k during hospitalization, platelet transfusion, then put on Prednisone for about 3 days then medical team discontinued prednisone. I am awaiting approval from insurance company for medication for hepatitis C. Doctors are having difficulty getting the cryoglobuline count in order to prescribe treatment for the cryo along with the hepatitis C. Additionally the cryo protein masks the C virus in blood tests. So many were taken in order to grab the C count to submit to insurance for approval for Hepatitis C treatment. Recently my legs are swelling with edema diagnosis. Taking Lasix and aldactone with weekly blood test to ensure kidneys and liver not being damaged. I am also on Neurontin for nerve pain as when my hand was drained of 155c's of fluid I received nerve damage in my entire hand and I am unable to use hand at all for 3 months now. I believe though, the nerve damage is the cryoglobulinemia and not due to the fluid drainage. I hope I am not too lengthy I am just trying to provide to you accurate detail. I thank you for your responding to my first email. I am scared about what may happen if the hepatitis C is not controlled and the cryoglobulinemia is not addressed, but I continue to be very positive and thankful that I still have my left hand even though I'm right-handed I've learned how to sign my name and do many things with my left hand. Enjoy your day, Deborah

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