I was recently diagnosed with jak 2 positive ET and placed on low risk aspirin only regimin (I am 45 years old). I've been feeling fairly positive about things, it explains (I thought) some weird symptoms that had no apparent cause and has made me appreciate life. When I talked to my consultant about the symptoms though he said they had nothing to do with my ET. Symptoms cover headaches, fatigue, dizziness, numbness in right leg that is almost constant, tingling in my hands and brain fog. I wondered whether anyone else had these symptoms or whether I'm still going mad? Thanks for your time, it's really lovely to have someone to ask things without looking silly...
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Hi and welcome to the forum. Yes I have all the symptoms you describe that led me to being diagnosed with ET jak2 . Fatigue and brain fog being the worst for me. I try to excercise by walking my dogs which makes me feel better and drink lots of water but sometimes I just have to rest if it's bad. Most on here suffer with various symptoms and share their ideas on helping to live with them. I am on hydroxy carbamide which I feel makes me suffer the fatigue more . Everyone is so helpful on here so you will get lots of support ...hope you feel better soon and wish you well.
Thanks for your lovely reply, it feels very supportive being able to speak to other people experiencing the same things, and definitely reassuring! Sorry that you suffer with fatigue and brain fog too though, I think unless you experience it yourself it's difficult to explain it to family etc. I wish you all the best and thanks for giving me a lovely positive start to my mpn journey, nice to know you're out there!
You seem to have all the classic symptoms that ET. What does your consultant attribute your symptoms to? Is he a specialist? I think you need to find a new doctor.
He's a haematology consultant but like you I was rather bemused that he said none of my symptoms were related to ET! His reply via email through his haematology nurse was this...
"I have discussed your symptoms listed with Dr Medd - they are not symptoms we typically associate with JAK2+ ET. He has suggested you see your GP for assessment of these symptoms and if necessary further investigations".
It's rather silly really because one of the reasons I was diagnosed was because my symptoms were investigated by my gp who could never find anything wrong except raised platelets going back at least a decade. They referred me to haemo who diagnosed me.
Thanks for reassuring me that these, are all probable ET symptoms, it feels strangely belittling to have very definite symptoms dismissed.
Thanks for the feedback! If stress can exacerbate symptoms that makes sense as I'm doing teacher training and have just spent a month in a tricky school. Perhaps time to take up yoga...
Aah a fellow teacher. I’m a deputy principal at a sixth form college. Am in process of making the very difficult decision to reduce hours/change direction but not because of the ET - i had a stroke and ET, stroke plus stress not a great combination to survive education. But I do love my job so want to say to you go for it. Teaching is such a rewarding profession and I have nothing but admiration for the teachers I have worked with. Yoga is a definite must as well. Good luck. Jx
Oh it's lovely to hear from another teacher! So sorry to hear about your stroke and the possible knock on effect on your future in education. My diagnosis did make me briefly question my decision to go into teaching, I'm aware that stress and ET aren't exactly great bedfellows but I really love teaching so I will just try to limit the stressers where I can. It must be hard being in a leadership position, lots of stress there I would imagine! If you don't mind me asking how do you manage brain fog and fatigue? I hope you stay well and manage to find a life/ work balance that keeps you in the job you love. Kx
I’ve probably had ET for years and that did not cause the stroke and been teaching 18 years so go for it. I rest a lot and I don’t fight the fatigue but it only tends to occur when I wake up and goes after an hour. Brain fog more tricky but again I just rest when it’s bad and then enjoy the moments in between when it’s fine. Tend to get it every two months. Keep me informed of your teacher training. So rewarding. Jx
Thanks, you've made me feel much more positive and I value the advice. Lovely to speak to someone who is also still positive about education! I'll let you know how I get on. Wishing you a happy and healthy summer. Kate x
One more teacher here. I retrained as a teacher for learning support after my opera career and was near finishing my masters, when I woke up with a light stroke (my third in 3 years). Yes, it was the ET (CALR) that caused those. I’ve had 2 more since (very light). I already had ET 7.5 years at time of diagnosis and was at 909,000 thrombos.
Turtles, I had all your symptoms and also histamine problems, which also have a lot to do with ET and the brain fog. I immediately went on an AutoImmune Paleo diet (adjusted to me) and my histamine intolerance (which started at the same time as my ET) went away within weeks. I was then able to take the Aspirin, which causes terrible brain fog and numbing if you’re histamine intolerant. Many don’t know that. Almost all my other symptoms were gone between 1- 6 months, also my cholesterol, incontinence, fatty liver and 16 kg! (35lbs) All gone.
I still get fatigue more due to my meds. (Anagrelid). I counteract the fatigue with a CoQ10 per Day. Unfortunately, with my health, my 13 year old was emotionally very affected. I ended up finishing my masters in the Globalization of Edu concentrating on international schools (I live in Austria), but have not been able to get started. I’m 54 and don’t have much time left. I received the best grades in my entire life and was burning to start, but my tiredness also comes in waves, usually when I’m stressed and that makes me lose hope with dealing with a teaching situation. I was always one to give my all at work.
Nevertheless, I am living very well with the illness and I am all in all much happier and appreciative of my life and everyone and everything in it than before!
Regarding your doctor, Turtles, I don’t think he’s right for you. I changed 4 hemos in the first year, until I found the one who listened and took me seriously. She was the 5th! So don’t be ashamed or afraid to look. It’s your life and your doctor should be a partner!
Welcome to our group! There are many of us and we are here for each other!! All best wishes. Anag
Hi and sorry for the late response, your thread got lost amongst the other replies! It's lovely to hear from other teachers, although I'm sorry you've never managed to teach, this can be a frustrating disease I'm learning! Sorry to about the strikes, that must be pretty scary, I hope you made complete recoveries! You seem very positive and that's really interesting about the histamine intolerance! I was also interested to hear about the AutoImmune Paleo diet, I'm going to Google it! I hope you're still feeling well and that you manage to use your teaching to find a rewarding career for the next several years. I was looking into other aspects of education and there's lots out there as a teacher that doesn't have to revolve around a classroom job,not sure what it's like in Austria though! Best of luck and thanks for the contact, let me know!
Thanks for writing! Here is a great AutoImmune Paleo website. My diet is adjusted to me. We do eat eggs; at least one per day each. We also drink coffee, but not strong. My dietician said, “When coffee, greek coffee.” Healthier. You also have to leave out any food you’re allergic to and can try adding things one at a time later on. Cheers.
I really do wish that haematologist, like the one you have seen, would tune into these forums and listen to us. And read the literature on symptoms. This issue seems to come up time and again and it can make one feel confused and like a fraud. Maybe take him a copy of the MPN Voice booklet on symptoms.
Nevertheless, I would say, that we also have to be conscious that not to put every symptom down to our MPN so as not to miss any other conditions we may get sometime in life.
Sounds like all the classic ET symptoms to me! MPN Voice produce some excellent booklets on all aspects of MPNs. The symptoms you mention are all identified and management strategies are suggested. If you haven’t already done so, check out the MPN Voice website. I’m sure our wonderful Health Unlocked Forum moderator, Maz, can organise for some copies of the leaflets to be sent out to you. You might want to use them as a basis for a discussion with your haem / GP. And you might want to ask your GP for a referral to a specialist haem. Someone with a knowledge of MPNs is very unlikely to have responded as he has done - and a CNS (specialist nurse) would have had a good perspective and advice. Wishing you all the best. P.S. I’m sure you’ll find a number of fellow teachers on this Forum!
Hi Kate, welcome to our forum. Very frustrating that your symptoms have been dismissed like this, but as you can see from the replies you have received so far, a lot of us get these symptoms with our MPNs. As Ebot has said, I can send you some of our information booklets and also a copy of graph produced by the MOSAICC study team which lists these symptoms suffered by people with MPNs measured against people who don't have MPNs, if you would like a copy can you please email me at maz.cd@mpnvoice.org.uk. Best wishes, Maz
Thank you to everyone who posted replies, I feel really overwhelmed!! I think you're right sue about not putting everything down to ET, I'm aware I'm heading into perimenopausal territory and that we also get other stuff 😊, plus I don't intend to let this dominate my life more than it has to! I think the reason the consultants comments bothered me was that, as you said, it made me feel a bit of a fraud. Thanks ebot and mazcd, I have had a look on the mpn site and there are some fantastic management strategies! I may also see if there's anyone in my area who specialises in MPNs. Mazcd thanks, some leaflets and some nfo would be great, I'll email! Once again thanks for such lovely support, ifeel far less isolated than I did a couple of days ago. Wishing you all a happy and healthy summer!!
Please don't feel a fraud & ensure you speak up for yourself at your appointments. My husband has ET/PV & even though we go to a specialist centre he still gets the same response. He also had the symptoms you list which led to his diagnosis as no other reason but he was referred back to GP by consultant so we have been to CFS clinics, sleep clinics, had various tests all to come back & say nope, nothing wrong apart from your MPN. It's sad as yesterday he had his quarterly appointment & has been particularly bad recently, he slept most of the time we were away on holiday last week & looks rough but he didn't feel confident mentioning it at his appointment as he would be dismissed again. I always go & fight his corner. Thankfully with his diagnosis he gets venesections quarterly too which make a difference for a short while. Remember you aren't alone & you sometimes have to have a strong voice - much as you will need in teaching occasionally x
I’m sorry about your husband feeling like that Chaz. Some doctors really make us feel like idiots, especially when we can’t defend ourselves. I hope he can find one that listens. It’s so important. All the best.
Thank you for the support and the advice to stand my ground with this. I'm sorry your husband has had such a negative reaction, although he sounds lucky to have you in his corner! I kept being told by my GP that it was anxiety and got put on sertraline. It was only because I kept going back that a senior gp finally looked at my raised platelets over the last decade and suggested ET. I hope your husband is feeling a, little better, thanks for your response!
Seems wrong that it's such a fight doesn't it. He'll feel better after tonight when he gets his venesection. Very kindly the lady in the treatment unit squeezed him in for tonight (rather than Sunday) as we have a Rugby Ball tomorrow & she understands that it will make it so much nicer for him to be in top form. Means we won't be leaving the ball at 9pm & he'll be OK to dance for a bit. Thankfully there is lovely people about who do understand how patients feel & will help, sadly it's not the doctor but so long as he gets his venesection we can live with that. I get the man I love back for a couple of weeks - we are always excited about it - sad isn't it!! 😉
That must be really hard to choose day to day with symptoms that limit quality of life to such a degree. I hope you both managed to enjoy the ball after the venesection! Best of luck for the future, the pace of change for some of these new treatments is good comparatively, let's hope new treatments are swift and effective!
Hi. Maz may be able to give some info on where to find MPN centres of excellence. It makes a difference when your consultant and team give you confidence.
My partner is ET Jak2+ and fortunately has none of the side effects that can be attributed to ET or its treatment with hydoroxy. Active forums like this will often produce posts from those with issues and not so many from those who do not. That can make it look as if the problems are more frequent than they are.
As you are being treated with aspirin, please do not forget to apply for your medical exemption card. It will entitle you to free prescriptions for *all* medicines - even if nothing to do with your ET.
Sounds like classic symptoms to me. I've experienced all of these. The hospital provided a booklet that describes the majority of symptoms and fatigue, headaches/dizziness and joint pain are included. Your not mad the doctors just experienced with MPN.
Thanks Osidge! I'll see if Maz can recommend any centres of excellence near me and thanks for the heads up about a medical exemption card! Helpful to consider forum bias too, i.e it's those of us who are symptomatic who probably post most, it's easy to form an echo chamber I guess so good to be reminded ET isn't always a big issue! Good to hear others with similar stuff going on too though so thanks Yorkstyke.
It is all too common that docs, including hematologists, do not know much about MPNs and the primary and secondary symptoms. Suggest consultation with an MPN-expert doc. I found one on this list of patient-recommended docs mpnforum.com/list-hem/ . Even if you have to travel, it is worth it. If your current hematologist is unwilling to collaborate with a MPN expert - then perhaps not a good provider choice for you. All the best.
Hi and welcome to the forum, I have PV jak2 neg and have had a similar experience not with my Consultant who is very supportive but with one of her
Registrars who told me I did not have an MPN and walked out of the room leaving a very upset and confused Patient. It was not until 3 months later when I saw my Consultant that I was reassured about things.
All the symptoms you are suffering are also familiar to other MPN Patients, you would really need to consider changing your Consultant or ideally get a consultation with an MPN specialist.
Classic symptoms. My previous doctor was the same and dismissed my symptoms as being a forty year old mom of young children. I recently switched doctors and wish I’d done so sooner. When doctors don’t believe us about our symptoms we are unlikely to get assistance feeling better. My new doctor let me try hydroxyurea to see if it would help my symptoms and lo, and behold, it has helped tremendously!
I'm glad changing your doctor helped, also good to hear that the medication helped with symptoms! I've been a bit wary about the meds as I've heard they aren't very nice so good to hear of the upside!
I was diagnosed 11/16 with ET also after having my GP investigate after my platelets were flagged. I am not a carrier.
I also take low dose aspirin.
There is a “list” picture for ET that has all the symptoms listed like you see hanging up in doctors offices for various common illnesses..I would forward that to your doc! (Include a little message that maybe he should investigate this disease further!)
😂😂
The problem is - how exactly are you supposed to know what it is that’s affecting you (your disease or something else) if your “blood specialist” doesn’t even know!
I recently posted for the first time about episodes I have..Hot, sweaty, nauseousness and then I cry and almost immediately there is petechaie on fingers, hand, wrist or face.. the quick hot sweaty nauseous feeling..others have experienced the crying and petechiae they do not..
So, I attribute the “cry” to the abundance of fibroids in my uterus..just as an overload of hormones going nuts..
Still looking for the answers to petechiae but I AM ON A MISSION!!
My platelets have been elevated for a little over 10 years..sometimes with beautifully perfect blood levels to go along with it..
It wasn’t until I had a clot that ruptured inside that I had any symptoms at all except for headaches, dizziness and being tired ALL THE TIME!!
I hope you can find another doctor! But if you can’t-educate him!!!
Thanks for the rallying war cry hayven 😊! A list picture and enlightening my consultant sounds good. Sorry to hear that you suffer from tiredness, fibroid and other lovely things. The petechiae thing with crying sounds weird, hope you find an answer and manage to avoid any more nasty clots!
It is so frustrating when the experts we rely on can’t be bothered to learn about our condition. It is rare, but there is a lot of information available about ET and its symptoms.
I was more fortunate, my consultant said that he didn’t know about the itching and ET, but he would find out, and he brought it up at our next meeting and told me what he had found.
That I can cope with and admire.
The patronising, lazy, type of doctors need a stiff letter of complaint sending to the management. It pays to make notes, and tell them that you are making notes if you are being fobbed off.
Hi, I believe they are all symptoms of your ET. You are not going mad I am post PRV , Jak2+ with what they call the "holy trinity" symptoms of all three MPNs; for the past 2 years I have advanced Myelofibrosis (I am transfusion dependent) and I had/have all of these same symptoms. Be kind to yourself, there are many things to learn to support how you are feeling, it is amazing how strong and resilient we become; I hope they start to subside for you soon, take care of you.
Thank you for your kind reply, particularly for taking the time when it sounds like your experience is really hard. I think you're right that we are all very resilient, certainly it sounds like you are experiencing that first hand! I am beginning to accept that resting when symptomatic is better than fighting and not to feel frustrated when close relatives struggle to see anything wrong. I am lucky though that at present these symptoms are a very small part of my life. Your support is lovely, thank you. I wish you as much ease and fulfillment as your holy trinity allows!!
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I am post PRV , Jak2+ with what they call the "holy trinity" symptoms of all three MPNs; for the past 2 years I have advanced Myelofibrosis (I am transfusion dependent) and I had/have all of these same symptoms. Be kind to yourself, there are many things to learn to support how you are feeling, it is amazing how strong and resilient we become; I hope they start to subside for you soon, take care of you. 
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