ET - what symptoms do you have ?: - MPN Voice
ET - what symptoms do you have ?
I have PV, ET (platelets currently at about 800) and multiple sclerosis so it is very difficult for me to tell what symptoms are attributable to what!
I bruise very easily and also get spontaneous bruising - I assume that this is down to the ET rather than the PV but I don't really know.
I do get very tired and have very little stamina - probably not surprising when you consider that I have 3 conditions that cause fatigue!
I'm afraid I probably haven't helped very much......
I have ET, have in the past, strangely before diagnosis, suffered from very bad frequent headaches but these have settled a bit over last few years, I have occasional palpitations but these are usually when I am very tired, my main symptom is bruising very easily mainly on my legs.
Hi - my husband was diagnosed with ET a year or so ago - platelets were up to about 1500... now on hydroxyurea and he's down to about 500 - 600 count. Generally health is ok but gets tired, tingly fingers and toes especially when tired.. but we have noticed lots of bruising - we had put this down to his profession ... currently sailing and skippering in Greece & assumed he was just banging himself a lot jumping on and off boats ... do you reckon this is down to the medication or condition? Apart from this - he does suffer from night sweats - and has done for a long time before diagnosis..
We are living life to the full though ... to make the most of good health - he is a shining example of over coming things by determination and a good mind set... He does find that he feels much better in a warmer climate though - let me know about the bruising if you have any more info... thanks
Hi there
I only take aspirin and have bruised easily for many years so in my experience the bruising is because of the condition not medication. When i speak with my consultant she also says it is the ET that causes it.
That's really interesting - thank you, are your bruises as a result of knocking yourself or do they just seem to appear on their own accord?
Most of the time they just appear from nowhere, I can wake up and have a big black bruise and have no recollection of bumping it, they can appear in the most strange places on my legs as well, like behind my knee!? Strangely the bruises that just appear don't tend to hurt, when I have knocked myself these bruises do hurt. I can bruise for the slightest reason too, the other week my bracelet was too far up my arm and left a bruise. Thankfully they are usually on my legs so I can cover them up.
Hi i have ET+MF asprin plus transfusions ,have good surport mpd nurse &consultant who i talk too every six weeks understand your fatigue i have to manage my day rest when i able it learning too cope holding my own look at the positives in my life & when i feel low its ok to drop a tear!
My main symptoms tend to be fatigue, bone pain (hips mainly) and headaches with visual disturbance. Bright artificial lighting seems to set it off. Bruises also seem to appear out of nowhere. I read Elvis-Fan's response with interest though as I also get heart palpitations but had never linked them to the ET.
Fatigue, migraines, visual disturbances, nausea, tinitus, poor circulation in extremeties, night sweats, impaired cognitive function (memory, concentration, ability to follow instructions), heart palpitations
I find many of these symptoms improve the better my counts are but some continue irrespective.
One bizarre good thing about having ET I rarely seem to catch colds or the flu now.
boy you sound like me
have all of the above
My doctor said he doesn't think any of the above is from my condition or mediation Hydroxyruea and Plavix
I am glad to have found this site today now I am having dull pain in my head
It is in my head LOL
take care all and thanks for the reports nice to know I am not losing my mind
Thanks for your answers. Interesting that people get more symptoms than you see written about! I have the fatigue, migraines, visual disturbances, poor circulation and aching legs.
It was interesting to read about impaired cognitive function and heart palpitations too!
rubyrubyruby, haven't you missed one additional ruby off your username ?
No, 3 is enough thanks!
he he 
Well where do I start ? over the past 12years I have had many side affects which many Doctors have said are not related to my ET but due to patient forums and the excellent and tireless work from the MPD VOICE team it would appear that I am not alone,we all suffer from fatigue in different degrees but suffer we do! I also seem to "shake" a lot the more fatigued I get.Bowl troubles seem to be caused by the medication,and then there's the mental side of things the more you worry the worse you get.It took me a long time to deal with my frustrations, learn better time management.and know my limitations.
I'm 40 and was diagnosed with ET a couple of months ago. At the time of diagnosis I was tired all the time but not able to sleep because of the night sweats. I was getting the visual disturbances, tingling in my hands and really aching joints and legs, bad headaches the works. My platlet count was 1450 and I was put on Asprin straight away and started on hydroxycarbomide after the BMB. The problems with my sight have stopped and the tingling in my hands, but still get so tired and sometimes my limbs feel so heavy and ache so much its hard to keep going. My consultant said the tiredness would stop when my platlet levels get back to a normal level but looking at the comments on here I'm worried this won't ever happen. Trying to stay positive and glad I've been introduced to this site.
DeniseC - I am 37 and diagnosed a few months ago. My platelet levels are not as high as yours so I am only on aspirin at the moment but I know how you feel about the heavy limbs and tiredness. I have 2 youngsters and 2 dogs and some days I feel about 87, not 37, when trying to keep up with them!!
Looking at the other question and comments on here it looks as if exercise is going to be good for the fatigue, even though its the last thing I feel like doing most of the time!! So that's going to be me trying to do at least 20 mins walking everyday and see if it helps. Will keep you posted on whether it makes a difference.
I feel 87 too. I found that funny you used the same age i do, when the kids ask how old i am.
I was just wondering what kind of visual disturbances you get? I have never experienced these but have had a twitch in my eye every day for past 4months, sounds silly i know but now I'm beginning to wonder if it's linked in some way. Been feeling so tired for past few days as well, wondering if my platelets are up? Next appointment is 8th August so will find out soon.
Hi, just before I was diagnosed I was losing the sight in the centre of my vision and the out side would sparkle. It would last about an hour at a time and was getting more and more frequent. I was also getting floating black spots virtually all the time but these have gone now thank god. I think we all get different variations of the same symptoms. Wishing you the best for your next appointment in August and hope that its good news for you.
Thanks for the reply DeniseC, I often get floating black spots around the edges of whatever I am looking at, I always wondered why, hmmmmm now I know. Very odd this condition isn't it. Thanks for the well wishes too. I have my fingers crossed for my next appointment as my platelets have been creeping up and up so my consultant and I have been talking medication 
I am just on aspirin at the moment. Hope all is well with you.
I get lines in front of my eyes with distortion of everything in front of me. Can last anything from 5 mins to 30 mins. Once I have had it once in a day it can also come back again during the day. I also get floating black spots sometimes too.
I hope this helps.
I know what you mean about feeling tired!!
Thanks rubyrubyruby, tiredness has been awful recently. I get floating black spots too but didn't ever think it could be due to ET. My eyes/vision often wobbles for a few seconds every now and then, everything blurs and I have to refocus, wonder of that's connected too. I am learning new things about this condition every day as a result of this site.
ETphonehome, I had a previous history - (15 years) of picking up colds (2/3 times a year)which lasted 6 weeks plus with such bad coughing fits didn't dare go into public places. I started hydroxycarbamide and asprin fot ET last August and have gone through the 'winter months' (including long plane journeys) without picking anything up. Unheard of - I feel it's a real bonus. Hope it lasts! Have wondered about impaired cognitive function: when started medication, I felt less able to cope, think things through but I feel that's passed now.
Does anyone suffer from very dry, itchy scalp, bordering on dermatitis symptoms ?
I used to suffer from that, but luckily it has cleared up now that I am on hydroxycarbomide. It's only now they've mostly stopped that I realise just how bad things were!!!! Just the chronic fatigue now and the aching limbs left at the moment.
I have had bleeding gums (for many years without realising it was a symptom of anything other than needing dental work). Dental work didn't help. I have also had eye disturbances like bright pixelations in circles in front of my eyes and the central area of my vision impaired.
I have from time to time painful stiff hips, usually one or the other but not both at the same time and can hear a click when I walk. Painful and restless legs in bed. I have stomach and bowel problems from time to time. I also have whooshing in my ears in a pulse like manner. I have erythromelalgia in my toes, palpitations, and high blood pressure. Pains in my chest and jaw and jaw locking from time to time. Sudden onset fatigue. I am at a loss sometimes to understand what symptoms are, as it were related to the PV and what are not!
Since starting on Hydroycarbamide some symptoms have disappeared completely, including the bleeding gums, eye disturbances, but have developed double vision and trouble focusing. The toe problem is very much improved with only occasional twinges compared to excruciating pain previously. Palpitations and chest and jaw pain have completely vanished.
The other symptoms remain, some all the time, others intermittently. I felt a lot better on Hydroxycarbamide but do like most of us, I think, worry about the long-term effects and just hope for some of the new drug trials to come up trumps so that we can all benefit from them.
I try to think of my PV in the same way as someone with diabetes or some other incurable disorder. At the moment there is no magic bullet and so symptoms will continue to rear their ugly heads from time to time. My blood now seems to be well-controlled and that is all I can wish for at this time. They do say that only 17% or so of Hydroxycarbamide users succumb to Leukemia but, when you have contracted a rare disease at the rate of, say, 1 in 100,000 or so that is cold comfort and the second time in my life this has happened. The first time was a pituitary tumour (benign) which also played havoc with my body. At least that problem no longer exists for me.
I just try to enjoy life as much as I can with my limitations.
Hi all - the more I read about others experiences on this page, it would seem that so many things begin to fall into place. I was diagnosed with ET over 16 years ago, when pregnant, how long I had been a sufferer before that is not clear. For at least half of those sixteen years, I was very uninformed with regard this condition, and I just did as I was told, e.g had regular blood counts taken, aspirin for the first 8 years and have been on Hydroxycarbamide + aspirin for the last 8yrs. Fortunately, I was relatively unaffected (and to a certain extent am now). However, looking back various investigations that had not really thrown up any known causes now appear to be linked to ET. Including, visual disturbances (pre-diagnosis), tingling in and pain in hands. I had unexplained infertility for 10 years - could this be connected? Various stomach problems.
Since diagnosis, bleeding gums, fatigue, bruising, hip joint problems (investigated no-known cause) this has diminished recently, throbbing ear pain, which can also go into the jaw and tinnitus. When going through the menopause I bled extremely heavily and constantly for the best part of eighteen months, other than polyps - which were removed, and made no difference - nothing was ever diagnosed. Eventually I asked my GP to put me on the mini-pill and the bleeding stopped. I took it for about a couple of years then decided to stop to see what would happen and haven't bled for over 2 years. My question is have any other people had the bleeding and fertility problems? Also, as I am now 54 (but otherwise fit, well and not over weight) could some of these symptoms just be a question of getting older, how do we know that they are linked to ET - any Medical Experts out there who are able to throw any light on the many different symptoms that people seem to experience?
Would value others opinions on this.
I also can relate to all the symptoms you mention over the years, however for me I didn't have fertility problems on the contrary I had no problem getting pregnant my 1st pregnancy at 22 was problem free. Then in my 30's when all the other symptoms of what I can only explain now as undiagnosed ET started we tried again, this pregnancy was ectopic and I ended up losing a fallopian tube. A couple of years later at 33 I became pregnant for the 3rd time, this time I developed pre-eclampsia at 21 weeks which I was informed was unusually early for pre-eclampsia, I lasted to 24 weeks when I developed severe eclampsia and gave birth to a still born little girl. All through this time there was never any mention of platelets, or ET, just it was one of those things. As a result of this I researched pre-eclampsia and a high protein diet along with an aspirin a day was recommended through my next pregnancy. I became pregnant for the 4th time at 35 and followed the diet and took an aspirin daily and give birth to another beautiful healthy little girl. It was only after her birth when I stopped taking an aspirin a day that my sore toes returned (this was excruciating in my late 20s early 30s) I remember thinking how odd and thats when I inadvertently discovered aspirin helped my sore toes. I wasn't diagnosed with ET until I was 52 years old, but thankfully had been taking aspirin all those years for my sore toes, which by the way when I tried to stop taking the aspirin returned with a vengeance. I now have 2 wonderful children, a son and daughter and a granddaughter.
Hi - thanks for your response - I also had pre-eclampsia, of course another of those disorder's over which there are a lot of question marks and unknowns, diagnosed at 31 weeks. I have a feeling the more they discover about MPD's a few mysteries with both this and other unexplained diseases will be cleared up and a number of loose ends will be tied up. Certainly, huge advances have been made over these past few years - which is extremely encouraging. Amazing how the humble and inexpensive aspirin seems to be so crucial in aiding this and fending off a number of other life threatening illnesses, in some ways my diagnosis all those years ago and the taking of aspirin since those days was almost certainly a God-send.
Desperately sorry to hear about your still born little girl, can't imagine the pain that must have caused, so thank you for sharing that. I am finding the sharing of experiences on this site so useful and extremely enlightening am sure we are all going to learn a lot more as fellow sufferers continue to swap their stories.
Thank you and God bless x
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