Hi all
When I was diagnosed with ET my biggest concern was that I may have an increased risk of dementia and in particular vascular dementia. My grandfather had vascular dementia late in life.
I'm not sure whether this is a rational concern but it is my biggest fear. Does anyone know whether there is a link between ET and dementia?
Lina
Hi Lina,
I’m really not sure if there is a link between ET and Vascular Dementia. I can see why you might question this....sticky blood, sluggish circulation etc. It has crossed my mind too.
Mary
Thanks Mary. Vascular dementia is based on blood supply to the brain being restricted so it seems theoretically there should be some link but I don't really know a great deal about ET. Should have asked my haepmtologist but won't see him now unless my platelet counts reach a certain level!
I have not been able to find a link. I have worried too. On the day my dad died from Alzheimer’s I had an appointment with my hematologist and when I told him about my dad he paused and then mentioned another MPN patient who had dementia. I could see the wheels turning in his head and then he brushed it off. It was a little disturbing to me especially as I went directly from that appointment to my dad’s bedside. He died less than an hour later. Dementia is terrible. I hope there is no link and in my searching so far I have not found one.
Hey Lina... :-0)
Happy New Year, by the way...
It seems to me that if restriction of blood to the brain might be a contributing cause to suffering from dementia, then perhaps: aspirin, and all other anti-platelet drugs might be helping us all avoid just such an issue.
E.g.
I was actually suffering from a type of psoriasis, (Or so others thought), prior to being diagnosed. However, the lack of circulation to my nerve endings saw the cuticle of my fingers, (& toes), to a smaller degree. Become quite flaky and they ached so much, in those earlier days.
Once I started aspirin, my circulation returned my nails to normal once again... Perhaps... the same could be true for any other vascular maladies... (?)
Just a thought. 
Steve
(Sydney)
Thanks Steve. Because of my age I'm not on any medication at the current time. Hopefully the 6 monthly bloods are frequent enough to identify any increases in platelet levels before clots etc become a risk!!
Hey again Lina...
Lina, there is no reason why you must wait six (6) months to have an Full Blood Count (FBC) done...
(Personally, I instruct my GP to arrange them whenever I want another done etc).
We all need to remind ourselves, *constantly & frequently*, that we are always our own best advocates. Poor grammar, I know...
However, that sentiment is critical to our health and well-being... In my view, of course...
Lina, ever since I was first diagnosed, (May 2016), I have been keeping all results from all the tests that have ever been done on me, (whatever the test).
One FBC alone (?), really does not mean that much in isolation, (for any test to have any true validity, all tests & those relative results must be repeatable).
There are so... many reasons for variables to exist in any set testing arena... & human error is extant too of course.
We all have to learn how to follow the trending of those FBCs, in my view... Over time, more and more becomes more observable.
Whenever, I do anything that alters my pharmaceutical status-quo regime, (including adding a new vitamin or natural remedy), I call for an FBC, and document/record the same...
Just because of the fact that you are younger than most here on MPN Voice; is actually, a really good reason for you to follow your treatment regime, (over time), as closely as you are possibly able. In my view...
Lina, we are all different in the way we choose to function in our daily lives of course. Some feel their methods are superior to others. However, I believe, (with some exceptions of course), that we ultimately know within ourselves the best way forward... and we should trust our own judgements, (as much as is practical for us to do so),...
AND NEVER BE AFRAID TO ASK ANY QUESTION!!!
That is how we learn, if we are fortunate enough to do so...
Best wishes
Steve
Yes dementia is a worry for all of us. In my circle of friends, 3 have died of dementia at a youngish age. When I started on HU, I did notice that my memory is not as good as it used to be, could be a coincidence. I now think that MPN does not cause anything, it is a symptom of something else and I am looking into my lifestyle to make changes. So if your doctor brushes you off, they may be right and they themselves are subject to the consequences of this modern lifestyle.
Thanks. My grandad was in his mid 80s before he showed any signs of dementia and prior to that did not have any major health issues. He lived until 90.
Hi Lina,
I also have ET and have been concerned about the possible link between ET and vascular dementia for some time. I try to be as well informed about my condition as my tiny brain allows, so I have been looking into this.
From what I can see, ET - particularly if untreated - can lead to an increased risk of thrombosis (clots) due to the build up of platelets, which in turn can lead to strokes / TIAs.
According to the British Heart Foundation there appears to be a link between strokes and vascular dementia (because a stroke may cause damage to the brain which can initiate it).
So in theory there could be a tenuous link between ET - stroke -, vascular dementia, but from what I have been able to find, there is no direct evidence of it.
So, until I am shown evidence to the contrary, the regime that I am following is to keep doing all the usual things to keep my ET under control (hydroxy, clopidogrel, reduce blood pressure, reduce cholesterol, a sensible diet, manage weight, stay active and drink lots of water) in the belief that if I can keep the ET under control I will also minimise the risk of stroke and, and the much smaller risk of dementia. Then I'm just getting on with enjoying life as much, and as often, as possible 
John
Lina...
ET usually indicates a higher Blood Platelet regime taking place. That is why most of us are usually taking something like aspirin, and especially so when younger, and before any other medications become prescribed etc...
Best wishes
Steve
Hi Lina_uk !
I do not think you should worry-- as long as you see to keeping up your oxygen in brain and muscles up by taking good solid walks or by bicycling. In fact worrying could much easier lead to dementia.
So don't worry-- eat healthy and nurse your body and see to getting a dosage of fun or happiness every day 
Greetings Yarrowleaf
Hi Lina,
If you have been diagnosed and are being monitored this definitely reduces your risk. That is the good thing to hold onto.My first symptom of ET was a brain clot,now on numerous meds including blood thinners. Dont look for all the could be's try positive on the here and now.
Regards
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