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Words are coming slower; cognitive decline seen in PV?
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (7)Comment receiving replies
@janemc I’m just 59 with PV Diagnosed 3 1/2 years ago. Brain fog is a real thing. Also the neuropathy? Sometimes in my face and tongue feels like I came from the dentist which can make my speech slow. PV or the Hydroxyurea? Who knows but it just sucks and we all find ways to deal. I try to stay busy and keep my sense of humor. This disease is so rare and even the doctors don’t know much. Low iron can cause almost all the issues we have. New studies show that it may not be the PV but our iron deficiency that causes the majority of our issues…
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@nypara66
Hello friends ! Was diagnosed with PV 20 years ago ! For years only phlebotomies were my treatment! I have to say that I felt best once the blood was removed.
I was on HU FOR COUPLE OF YEARS , did not help with symptoms. So when JAKAFI BECAME AVAILABLE AND POPULAR, I was given JAKAFI , I liked how it took away my symptoms but
AFTER ABOUT TWO YEARS ! All my blood numbers took a dive and I became very anemic! First decreased AMOUNT, then stopped because my numbers kept on dropping!!
I could not get up the stairs
Very scary 😧 I believe that old drug like HU , were not invented for blood cancers . They have some serious side effects . Friends , I ALSO HAVE TIMES WHEN I CAN NOT COME UP WITH A WORD WHICH I USED MILLIONS OF TIMES , I often have to describe what I wanted to say using different words,
THE OTHER SIGNIFICANT ISSUE I HAVE IS withMY EYES ! I see double letters and looking out every thing is blurry or fussy 😩
I believe it’s the illness and the medication we are taking! I am now on OJJAARA FOR THE LAst EIGHT MONTHS AND STILL SUFFERING THe SAME SYMPTOMS! I AM ANEMIC AND ALL MY BLOOD NUMBERS ARE BELOW MINIMUM ON THE CHART ! I want to ENCOURAGE YOU TO READ WHAT OUR MAYO FRIENDS ARE POSTING AND RESEARCH YOUR OWN BLOOD 🩸 ILLNESS
THANK YOU FOR YOUR HONEST POSTS AND SHARING! I wish ALL OF YOU BEST OF LUCK 🤞
SINCERELY HANYA