Just got back from a doctors visit. He tells me I have Essential mixed cryoglobulinemia and wants to put me on DRUGS!! WTF?????
I told him I have to discuss this with my husband, but I really don't. I was going to drop the doctor anyway because he wants me to start chemo and I just do not want to.
Does anyone have experience with this condition????
I am frightened and wondering if there is something "herbal/natural" that I could do???
Thanks to anyone who can advise me,
VS
I want to know if you have any symptoms of cryoglobulinemia? I got my first symptoms when my legs swelled up from just below the knees to the top of the shoes I was wearing, and were covered in bright red blood clots the size of pennies and dimes. Scared the living crap out of me. I went online and searched high and low and couldn't find anything. All I found was rashes. The swelling and red spots showed up after staying up all night on the computer and then running errands all day. When I got home, I was shocked to see the shape of my lower legs. I stayed in bed for a few days with ace bandages for compression, a few cushions for elevation. The spots and swelling went away and left blood scarring, like brown blotches, all over my lower legs, esp on the shin bone where there is no muscle. It was green and purple for weeks, I finally took to it with some friction and pettrisage, being a massage therapist, and the bruising faded. My legs still show the blotchiness 5 years later.
I was told the only cure was to get rid of the virus, ie, to treat with Interferon and Ribavarin. I refused. Instead I got blood thinners and took them for a couple of years. Nattokinase, bromelain, that kind of stuff.
I got the red spots a couple times more, once after sitting in a cold plane for 5 hours going to Hawaii. But no swelling and the spots were much smaller and went away in a couple of days. Now, if I sit too long, I get little teeny ones around my ankles is all.
Did you google it? If you go up on the right side of this page to the links. click on the last one, HCV Advocate has good fact sheets and look down the list for extra-hepatic symptoms. I might also have something in my computer files about it....if you're interested.
Several years ago I had red spots on my lower legs. At first I was told it may have been bug bites, but that turned out wrong. Then I would get larger red areas on my joints and then it would hurt. It did get to the point I had to use a cane to walk because it hurt so bad. Turned out they did a biopsy of the reddened area and was diagnosed with leuykocytoclastic vasculitis (LCV). Inflammation of the small blood vessels. Two years ago I was diagnosed with cryoglobulinemia through the biopsy of my kidney. I have been on hydroxychloroquin since 2015 when I was diagnosed with sjogrens. They treated my cryo with Rituxan since 2022.
I was told the only cure was to get rid of the virus, ie, to treat with Interferon and Ribavarin. I refused. Instead I got blood thinners and took them for a couple of years. Nattokinase, bromelain, that kind of stuff.
I got the red spots a couple times more, once after sitting in a cold plane for 5 hours going to Hawaii. But no swelling and the spots were much smaller and went away in a couple of days. Now, if I sit too long, I get little teeny ones around my ankles is all.
Did you google it? If you go up on the right side of this page to the links. click on the last one, HCV Advocate has good fact sheets and look down the list for extra-hepatic symptoms. I might also have something in my computer files about it....if you're interested.