I was recently diagnosed with PV but have had no 'symptoms'. I presented to doctors via a routine blood count following a 12 hour nosebleed. I had a stroke four years ago but it resolved quickly (or did it). Looking back however - post diagnosis - I am realizing that I have lost my ability to change focus quickly (multitask?) and my will/motivation to do that. To a level that really is paralyzing and quite a uniquely new problem for me. But that is it. To everyone around me I am totally symptom free and am just 'lazy' or 'getting older'. Neither of which are very helpful or hopeful.
My question is, for those who had similar symptoms, in your experience/research are these symptoms psychological or are they related to actual blood viscosity/flow issues in smaller arterioles/etc of the brain? Do they resolve when hematocrit/hemaglobin are lowered (still a work in progress for me) or are they like white matter disease where the changes are permanent?
Basically I'm asking what others have discovered re blood/brain issues. The thrombotic issues re stroke are obviously a major carotid artery issue. But I need to do research on PV and MPN's so that I can be a source of knowledge about that to neurologists or neuropsychologists (who are both focused on the nervous system). Can someone point me in the right direction here?
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I find it really interesting when people say they had no symptoms
I hear this often but I had many symptoms just as you describe and feel they are due to increased blood viscosity. I have not not had a stroke but was rushed to hospital with extremely high Bp and talking nonsense .. given medication to reduce Bp and sent home .it was not noted that I had high platelets nor that I had white matter changes . Those changes increased from moderate to severe Over the next few years
I also had visual disturbances along with brain fog and times when I just couldn’t think . Pains in my limbs and bone pain . Dizzyness and vertigo . When I started clopidogrel many of these symptoms went but still my haematologist and neurologist don’t attribute them to ET ..
I have intense fatigue from Hydroxycarbamide but as the dose has been reduced and I always take it at night that has improved . Many others seem to experience the same with MPNs this has been reassuring of course as we age things change but when it feels like all the things I did daily with ease were no longer possible I find that hard to accept .i am managing a diminished life but still finding joy and at 68 think this is not being old but dealing with a condition that’s very frustrating and unknown to most . I guess I am saying it’s not psychological in my opinion L
You have asked what is a rather complex question as if bears on both hematological and neurological function. Better understanding will be based on building an increased knowledge base about both both areas. Your experience that people cannot see the actual effects of PV is quite common. Many of us experience that, including with medical providers.
As you likely have already realized, the stroke and the then undiagnosed PV are likely related. PV increases our risk for thrombotic events. It also alters blood flow to the brain due to the viscosity of the blood and changes in how blood cells interact with the vascular endothelium. This can result in a variety of issues including migraines, dizziness, visual disturbances, and more. In addition, the JAK2 mutation causes an overproduction of inflammatory cytokines. This causes many of the symptoms we experience such as fatigue and insomnia. Chronic systemic inflammation s a very real problem with MPNs. You may find that many symptoms you experience are in fact connected to the MPN.
The treatments for PV can also cause neurological issues. Venesection-induced iron deficiency can cause issues with memory and concentration. I experienced those and other effects from the venesections. Hydroxyurea can cause hallucinations or seizures (rare). Besremi can cause neuropsychiatric issues. Treatment can make a huge positive difference in managing PV but also comes with risks. Fortunately, treatment option have improved in recent years and more improvements are coming.
Here are a few resources you may find helpful.
Excellent presentations on MPNs. Start with MPN Molecular Biology.
I had what I now believe were occasional TIA's in the year or so before the Dx. A feeling of dropping on one side of my head, and vertigo. I acted after one night I said "something doesn't feel right" and it was different from the mild long covid I had.
So my example is a vague "not right". These did improve once my blood counts were good with Hydrea. Mostly PLT was high.
Hello, I have ET, currently on hydroxyurea 500mg daily, with an extra 500mg on M,W, and F's,and have noticed the brain fog issue with me as well. I'm 57, and was diagnosed in 2015, but the blood tests I had earlier showed a heightened level of platelets and Inoticed brain fog then, too. I had a stressful public finance paralegal job, and thought it was just that, but hindsight is 20/20. Doctors then had asked me if I recently had a cold. Hope this helps.
It was probably a shock for you like it was for most of us to go in for a blood test and find out you have a blood cancer that has no cure. I am 75 with PV diagnosed 8 years ago and still doing fairly well.
As far as the PV goes I think the first thing to do is find a good heme/onc Doc that you trust and then if they are not a MPN specialist, find one who is a specialist who you can see as needed (PV Reporter and MPN research foundation both have a list of specialists). There is a huge difference between most local hematologists and a MPN specialist. Do your research and write down all of your questions for your visits.
There is a lot of information to be had if you look for it. You can find information at the MPN Research Foundation, MPN Voice, PV Reporter, The Video Journal of Heme/Onc, MPN Hub, etc. There will be links to research articles and studies very frequently posted by members of this forum in their responses, Hunter has listed several in his response to your question, check them out, there will be many more as you read posts on this site. There are a lot of very good videos on You tube that you can find by searching for your particular topic. I always check the references at the end of articles and research papers and usually find several other articles that pertain to what I am looking for and you can usually just click on those articles to access them. You will learn who the leaders in this field are such as Drs Mesa, Gotlieb, Hobbs, Spivak, Gerds, Mascarenhaus, Rampal, Verstovsek, Silver, Harrison, Kuykendall and many others.
I had several brain issues such as brain fog, dizzy spells, double vision and headaches which I believe got better when my Hct went from 55 to below 45 after starting on meds.
I hope this answers some part of your question. Sorry you have PV good luck to you going forward. Best
Hello. Re. your comment ‘The thrombotic issues re stroke are obviously a major carotid artery issue’ - did you mean that you think it means there is a localised narrowing? If so, not necessarily. I had a (v small) cerebral infarct before diagnosis and all the tests that were run showed no plaques, low cholesterol, etc. I think in my case it’s that the PV made the platelets stickier than usual - that is now countered by clopidogrel (some take aspirin) to change platelet behaviour and interferon (to reduce the overproduction of the various blood cells). I do get frustrating head sensations and am hoping that when the counts are consistently in range (I’m not there yet either) these will be less frequent/noticeable.
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Diagnosed ET - wondering about symptoms 
Update 3 on appointment 
Weird brain feelings
Starting on Hydrea
