I’m feeling very low at the moment. I was diagnosed with ET jak2 + on 11th April.... my haematologist is very blase about the whole diagnosis. I tried to explain to him about the symptoms I was having ie constant headache for 14 weeks with 4 migraines on top, sickness and extreme tiredness. Over the last 3 days my shins have been painful when I walk like I have been kicked.... my haematologists words were “it’s very easy to blame the problems on your diagnosis!!!
I have another appointment with him on 30th May, I am to have my bloods done a week before this. Pending on the results he mentioned about referring me to another hospital to have a bone marrow biopsy done and maybe start treatment.
Please can you help me.... I feel like I’m going crazy with these symptoms and he’s made me feel like I’m making them up.... believe me i wish this headache would just go!!!
Kelly xx
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Dazakella2010
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Hi. Life sounds grim. Can your GP help? The treatment for ET, if there is any, is based on relieving symptoms ( and reducing high platelet counts if you have them) and as the major risk from ET is blood clots, your GP can make sure that you are protected from that risk as well as you can be.
If your urine is darker than pale yellow , drinking more water can help generally.
Hi Kelly, you will be fine. Welcome to our group! The first few months are emotionally a roller coaster. Please find a good hematologist who listens to you! Every question you have is real and should be taken seriously. I stay away from doctors who brush things off. In our ET world, attention to detail (symptoms) is important. Do the biopsy. As soon as I had my diagnosis, I was put in meds and aspirin. The symptoms started getting better, especially the legs. Perhaps you deep vein insufficiency like I have. Thick blood can cause that over time. In this case, you really need support stockings to make sure the blood keeps moving and to keep you from getting thrombosis. Please make the effort to get to a vein doctor to do an ultrasound of your veins. I know it’s a lot right now. It’s important. Read up on ET. There’s a lot on the MPN website. It will empower you. But don’t overdo it with the reading. Might become too much right now. Take nice gentle walks and pamper yourself by taking time to do the things you like in between. You will get a lot of support from all of us here.
Hi there Kelly, you have my heartfelt sympathy. I have been in the same position with the headaches and the haemotoligist! Since being on hydroxy and clopidriol a different haemotoligist and drinking enough water every day to fill a small pond! The headaches are Much improved. My mental health has much improved by joining this site because everyone here knows that many of our symptoms ARE to do with the MPNs and give just a few words of support which mean SO much to each of us, not just the recipient. Hope things improve soon. Regards Carole 🤗
Hi Kelly, you are not making them up, these are all symptoms associated with MPNs, and can be suffered in varying degrees by most people with a MPN, they are horrible and you have my sympathy. Sometimes medications for MPNs can help alleviate some of the symptoms, but can also make them worse for some people. Speak to your GP about the pain to see if he/she can prescribe or advise you on pain relief that you can buy in a pharmacy to help when the pain is particularly bad. Kind regards, Maz
Hi, Kelly. When I first got diagnosed with ET 11 years ago, I had gone to my gp because of chronic headaches and he did some bloodwork. My platelets were about 600,000 so he referred me to a hematologist who did a bmb and that’s how they confirmed it. My hemo put me on hydrea and anagrelide and my headaches disappeared. So hang in there. Once treatment starts, you’ll probably start feeling better. Let us know how you’re doing.
Hi Kelly, the others have given you great advice, so I just want to say I’m thinking of you, totally sympathise - all these symptoms are horrid, and sending you E hugs and 💐💐.
Make a list of your symptoms and ask your gp what he/she can help you with and don’t be afraid to be assertive with your haem team as it is your illness and body, you are going through it and you are NOT making it up. I’m a lot more assertive than I used to be which I think is good when you need answers, second opinions, etc.
Keep in touch. As you have seen, we are all here for one another. Kindest regards Aime xx😻😻
Thank you all for your kind reply’s... my Gp is not very good with my diagnosis but has prescribed me naproxen for my headache and some anti sickness meds.
On my last haematologist appointment I was given a Macmillan nurse.... she have me her contact details so I have just written an email to her explaining my concerns. My haematologist did mention that I could possibly need refereeing to St THomas’s hospital so I have asked if this could happen for me to get a second opinion. I will keep you updated
Really sorry to hear that you’re feeling low. It makes such a difference when we feel confident in our health care team. If you’re not happy with the outcome when you next go back to clinic seriously consider a referral elsewhere. You don’t have to put up with it. Be your own advocate!
Because you’re so young, I would be inclined to seek a referral to an MPN Specialist, especially as treatment has been mentioned. Pegasys should be offered as a first line treatment because of your age.
Headaches are one of the symptoms of ET, as listed on MPN Voice and the Mayo Clinic. How can any haematologist be so dismissive?
It doesn’t matter what your platelet count is, unless it’s under 450 of course! If you are symptomatic and it’s affecting your quality of life.... then just maybe treatment is required.
I think you should ask to be referred to Guy’s/ St Thomas where Professor Claire Harrison (leading MPN Specialist) leads the team. You will be in good hands.
I have just had a phone call from my Macmillan nurse.... my haematologist has now referred me to St Thomas’s hospital. So I have just got to wait to hear now... I wonder what the plan will be? Xx
Delighted for you Kelly, you’ve made a very good decision. Hope you don’t have to wait too long!
Whatever the plan, you can be assured that you will be in the hands of a leading MPN clinic who will have your best interests at heart. More importantly, they will believe that your headache symptoms are ET related.
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