From ET diagnosis to uncertainty !

Can anyone shed any light on my situation please? I was (so I thought) diagnosed with ET June 2015. My platelets are not very high, over the last 2 years ranging from about 437 to 460,My nurse said high in my clinic is 400 and over, I tested positive for jak 2 albeit apparently very low just detectable. My white count is usually a bit high and my neutrophils too. I've been experiencing night sweats for the last 6 months or so, possibly my age (51) periods still regular as clockwork. I get very fatigued and have been experiencing dizzy spells, burning pain in my fingers and toes.Deep pain in my thighs, I do also have fibromyalgia. Recently I went to see Adam mead at the churchill hospital , he said he's not convinced I have an MPN or I could be right at the beginning of the diagnosis. He told me there are members of the population with similar platelets and low jak 2 positive like me that have nothing wrong with them? It's left me feeling pretty confused to be honest, I didn't know you could have a positive jak2 and have nothing wrong with you? Secondary thrombocytosis was ruled out at the beginning of my diagnosis I thought I had. He said he didn't know why a diagnosis would cause me worry as we have a normal life span, I didn't really know what to say to that, he also told me dizziness is not really a recognised symptom of an MPN? I have read everywhere that it is? I don't really doubt him but he's very much confused me! He is seeing me again in April and I almost feel like I don't want to go, he sent me for a scan today and the Dr said my spleen looked normal thankfully. I probably sound like a right moaner, I know my counts are pretty good but I don't like suddenly being in a limbo like state not knowing what's going on.

10 Replies

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  • Hi Kazzy65, have you thought about getting referred to Proffessor Harrison at Guys and St Thomas in London. She is an expert in MPNs. It is so unfair that you have been left in this confused state and you certainly are not a moaner. You are clearly symptomatic of 'something' and you need answers. I'm a bit concerned that you were told dizziness is not a symptom of MPNs. You only have to read through some of the posts on here for that to be questioned.

    When I met my haematologist for the first time and she diagnosed me with ET (Jak2+), I felt she explained everything well and answered all my questions. We're all owed that much, aren't we? If you're not happy when you go back to the haematologist in April sack him.

    Mary x

  • Hi. How frustrating this must be, I can't imagine. I'd suggest you write MAZ and ask her. I'm sorry I can't help. Good luck, Katie

  • Hi Kazzy

    I too suggest you get another opinion and would be interested in how you get on. I am in a similar situation recently being diagnosed with ET, Blood test confirming JAK2+ but with only 2.2% gene load which is low. I had bone marrow biopsy and trephine which confirmed the diagnosis and currently take Hydroxyurea 5 times a week plus daily aspirin (considered high risk even with low platelet count due to suffering 2 blood clots).

    I battled at first and 'moaned' until I saw an MPN specialist which at the moment is every 2 weeks. I hope you get some answers as it is difficult enough with all the symptoms let alone having to fight for answers !

    Good luck, take care

    Lorraine

  • Hello Kazzy, if in doubt ask for a second opinion, ask for explanations , ask them to make very clear what your diagnosis really means , I get really cross with these 'DOC'S' who just flit over your appointments and don't explain everything . Now I go armed with a written list and check off in front of them each and every question I have put. Good Luck. June.

  • Hello Kazzy, how very upsetting for you. You deserve some straight answers whether you are at the beginning of something or not. My suggestion would be to arm yourself with info and as a start ask Maz on this sight to send you leaflets about all the MPN's. If you still feel uncertain then get a second opinion and as someone else suggested, try and see Prof Harrison at Guy's. There is truly none better. Best wishes, Linda.

    By the way, I certainly get dizzy's and have done for years both before diagnosis and afterwards.

  • Hi kazzy

    I also saw dr Mead twice end of last year & was left confused, he's said to be a very good MpN doctor but the first time I saw him he suggested going on interferon, which really scared me, month of worrying, then when I went back thinking I was starting on it, he backtracked & said it wasn't necessary & he would wait until he got funding for Pegasus later this year!

    I was left confused & anxious as nothing had changed since first appointment & I got the feeling it was all about funding

    How did you know your jak 2 level? No one has told me, but I suppose he would have said if it was low

    My platelets are around 600, -700, dr Mead didn't give me exact numbers & I have sane symptoms as you really

    Hope you get some answers, I watch the videos on here & patient power & it does seem we have something to worry about!

    Good luck

    Melanie

  • Hi Kazzy, I am in a very similar situation to you. Diagnosed with ET 10 years ago with platelets around 460 and jak2+, no bmb, told it wasn't necessary. Also told my symptoms including dizziness were not due to ET so had years of confusion and anxiety. Consultant then retested for jak2 and told me it was negative and I didn't have ET! 2 years of feeling very happy I didn't have ET but still had symptoms so tested for lots of other illnesses which was very stressful. I moved area and new gp repeated jak2 test and it was positive, she referred me to a Haematologist who diagnosed ET with no bmb!! I asked gp to refer me to Dr Harrison for a 2nd opinion, she immediately advised a bmb and repeat jak2 test. Tests showed I do not have ET but I am jak2+ with some bone marrow abnormality, but not enough for diagnosis at the moment. I feel much less anxious now I am under the care of Dr Harrison and her fab team, I would advise you to seek a 2nd opinion. Wish I had had more knowledge when first diagnosed as I feel I have wasted a lot of time worrying for no reason.

  • Hello

    What medication are you on, if any? Some of the symptoms you describe are that which I suffer from on my chemo, particularly the burning sensations and muscle/joint pain. I'm also in menopause (I'm 49!). I have ET (Jak2 neg). You deserve to be diagnosed properly and I agree that you should seek an second opinion or a referral to a specialist MPN consultant.

    Good luck

    Angela

  • Thank you for the replies, I'm not sure what to do, since the first diagnosis Adam Mead is the 3rd hematologist I've seen, in fact it was the 3rd time I'd been to a hematologist since 2015 (august). First time was ok, not much info but ok, second time was a different hematologist, he basically said to go away, enjoy my life, not worry etc, just keep getting my blood drawn. From that appointment I got a letter through the post stating I was to go on Hydroxy!! I was shocked as no mention of it at my appointment, it said to pick it up from the GP and to start it, I had a voicemail message from my GP to go collect it and start it after the weekend! I looked again at the letter as my platelets weren't too high, turns out I was mixed up with another patient! It said I was on high blood pressure treatment, I wasn't, good job I knew about platelet numbers and knew I was low risk. MY nurse confirmed I wasn't to start taking it. After that I said I wouldn't go back but trusted my nurse to check my bloods. A year ago I shattered my arm in a fall and had two surgeries (10 hours) radial nerve palsy, it's still broken a year on, platelet worries went out the window! My nurse phoned and asked how I was, was a bit concerned with symptoms, she said Adam Mead was an expert and she'd get me in to see him. So here I am, had so much time off work with my arm , a years physio, I've just about managed to keep my job so more appointments in London may not go down well, they don't know about my platelet problems. I can understand where he's coming from with the low jak 2 + but are there really people with all my counts, platelet, jak 2+ and slightly elevated white count that are healthy? I know dizziness is a symptom, my husband thinks I should see him again armed with all the info I can get! I took a list with me last time but didn't manage to say it all, the wind was taken out of my sails so to speak when his first words were he wasn't convinced I'd got an MPN. I can't help but feel like I don't trust what they say after my experiences with them! I just hate this limbo I've found myself in. I'm on 75mg of aspirin a day. He said i could have a BMB but it probably wouldn't show anything at this stage, but if my platelets rise to 600 he'd order one. He did say that the night sweats could be a symptom and doesn't think it's the menopause.He said my Jak2+ was only just detectable. Maybe he was more thorough than I thought but so confusing ! Sorry it's so long and half my life story! Do all hematologists think ET is nothing to be worried about?

  • Jazzy I read something recently that made reference to a latentcy(?) period of around two yrs where patients may be asymptomatic. Could that explains low platelets levels, low jak2? I have never heard of low jak2, my Dr did not mention anything about Jak2 levels. My doctor acted disgusted as he went back thru my chart trying to find my last CBC - there was none. Although I've been with the same HMO for 10 yrs I'd never had one. He just commented you've had this for quite some time. I have never had a bmb ordered. Maybe we can ask Maz about Jak2 levels and bmb with ET. My hematologist is housed with onocology - the vibe I get is the same - no big deal move along. Maybe because the other patients they see are so ill? I go again in April I just hate to go it feels like a waste of time.

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