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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 6 hours ago | Replies (427)
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@momoffivetoo

Thank you so very much! I haven’t actually donated blood yet. It was thrown out as kind of an off handed comment, so I didn’t think it was really all that necessary.

At this point, I’ve realized the pain I’ve had in my toes these last few months probably wasn’t arthritis like I assumed, and the itching when I get in the tub isn’t normal either. I am compiling a list of all the weird things I’m experiencing so I can see if there’s anything that can help.

I had a radical hysterectomy two years ago as well, so I’ve attributed a lot of symptoms to surgical menopause. I’ve been losing a ton of hair as well, so my list of strange things is growing. 🤣

I’m really hoping that treatment will help my fatigue. I always push through and assume I’ll never feel better because of the lupus, but I’m excited to think I might start to feel better!

Thank you again for your communication - it makes me feel better to know I’m not crazy in thinking this is what’s going on. I don’t want this disease, but I DO want validation because I knew something was wrong. I’ve been saying it to my husband for a long time.

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Replies to "Thank you so very much! I haven’t actually donated blood yet. It was thrown out as..."
christina3444 | @christina3444 | 4 days ago

Hello. Please trust what you are feeling. No one else knows you like you!
And, get an order for a blood test to determine if you have the JAK 2. Your GP can order that.
I consider myself lucky that of all the diseases and conditions that could have afflicted me as I got older, I have PV. That may sound odd but, so far, I take two capsules a day of Hydroxyurea and have a phlebotomy every two or three months. I take a low dose aspirin to help prevent blood clots. I get tired and have to pace myself but compared to so many people suffering from catastrophic illness, disease, Im OK. I was scared at the beginning because of the unknown but that’s expected. Google has its place but as I’ve said to a lot of people, a little knowledge is a dangerous thing.
You sound like a smart woman who has gone through a lot and come through it. This is just another challenge and with the right medical team you will get through it just fine.

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