I am hoping someone can help. I am 37 years old, and had a bone biopsy a few months ago to see if a vertebral lesion was malignant. It came back negative for a metastasis, but showed myelofibrosis. I was referred to a hem/onc who does not think it's an MPN because of my age. I just did 23 and me DNA testing, and it came back positive for the JAK2 mutation. The hem/onc now wants to do a bone marrow biopsy, but I don't think it's necessary as I have all of the diagnostic criteria for Primary… read more
I was told by an MPN specialist that they can see everything they need to from a tube of blood. A biopsy confirms what they suspect from labs. Confirming gives them a better idea of what they're… read more
I have well-managed ET with minor symptoms. I have seen others talk about “bone pain” and I’m not sure exactly what that means. Is it the same as joint pain (knee/wrist/etc.)? Or is it something else - such as sharp pains in long bones like the arm (radius) or thigh (femur)? Can someone please describe it in more detail for me & explain how it was diagnosed, and what your doctor suggested for relief ? ~ Thanks!
Thank you, Tta, for such great references and information. It’s very helpful! Lydia ~ thank you for your insight as well. I had a strange pain in my upper left arm/shoulder last year that would… read more
Yes, I definitely have memory issues!! I'm afraid it's from the ET itself or the HU. I feel so self-conscious when I'm talking to someone + I forget a word or 2, or even forget what I'm talking… read more
He was proactive at least
ran extra blood tests, did a blood test to check blood thickness, a chest CT scan to look for clots, a pelvic ultrasoundand to check spleen if enlarged, and a transvaginal ultrasound bc longer heavier shifting periods last 3-5 years.
Chest CT Scan negative, pelvic ultrasound no clots either. I didn’t think there were but felt better doing it bc I have medical anxiety, and anxiety about Rx, meds, even some holistic herbs, etc.
I think period issue, being 44 and also… read more
I go to MDA and they accept my insurance. I just got on Medicare, but they seem to indicate they will pay. You do need to see MPb specialist. The local oncologist/hematologist doesn’t usually have the… read more
The drs tell me pv is super rare but that IM rare because I am only 32. I started having a ton of symptoms during the covid shut down..broke out in shingles for the first time, insane pain in my neck, upper back, ankles and knees, migraines every other day, brain fog, extreme fatigue and serious memory issues. So that was 2020 and I JUST FINALLY got a diagnosis this year! Its been a really hard few years getting through countless tests, phlebotomies and finally a bone marrow biopsy trying to get… read more
Hello mam
I'm 32 and have myelofibrosis.
I also search for same age patients often to understand the symptoms batter.
Hi All,
I am a 62 y/o law student. Over the last nine months or so, ever since my polycythemia diagnosis, I have noticed trouble recognizing, remembering, and naming other law students on my campus. These are people I feel I should know. I wonder whether my blood-sludge is decreasing oxygen transport to my brain. I worry that this problem will get worse and affect my capacity for critical analytical thinking.
Online reading has not indicated polycythemia as a reason for such memory trouble… read more
Thank you, Tatiana. Very helpful information! It's good to know I am not alone here. I will follow your research links.
Dr. Fleischman is looking for families with multiple cases of MPN's and/or an MPN and other cancers. She is hoping to have some family members participate who do not have an MPN - or another type of cancer - and also have family members who have say skin or other cancer but not an MPN. She will send you everything you need to participate. All you have to do to is give the vial to someone doing your next blood draw so you can send them a blood sample in the all postage paid envelope and submit… read more
Me, me, me, like the donkey from Shrek
I am immensely impressed with UCI, her medical center
Thank you for the clarification. My Hematologist is not responding to my e-mails. I have to call her office tomorrow to follow up. I don’t understand why they can’t just respond. Usually they respond… read more
I’m new to the site and just received positive JAK2 mutation results - discovered via a high platelet count at my regular annual physical. I’m in my mid-60s, in excellent health other than high platelet levels (800s), and all other blood levels and markers are normal and I had no symptoms. My hematologist suspects ET, but I will meet with him next week for confirmation & a full consultation and review of treatment options. The only other remarkable issue I’ve had over the past few years are… read more
Dear MJGee
I experienced an ocular migraine the day I suffered a mild heartache in November of 2017 which led to my diagnosis of ET Jak2+. Since, I experience about 6 a year. I also, started with… read more
I received my diagnosis with no symptoms on Nov 30 2023, recently in the last 2 weeks I have had extreme fatigue at 6:30 at night and I weird burning tingling feeling under my skin. Does this mean it is processing? Should I call my doctor?
I believe every 3 or 4 months, even by telemed, and cbc/cmp labs monthly would be better monitoring.