Update, probaby posted in the wrong bit

Hi all,

Just wanted to update you all. Just seen haematologist and he confirmed I have ET and Jak2 poss. Put me on aspirin and practically shoved me out of the door, bit extreme but he wasnt interested at all when I asked what can I do about fatigue, not related, pins and needles, night sweats, pain etc all not related. I will have chat with my GP and see if I can get a referal elswhere and hope to find someone who appears a little interested.

Thanks again


14 Replies

  • Hello,

    what a pitty your Doc was 'one of them'. I think, as you can read here, that if we are so many of us, having the same problems, he must take back what he said. That it isn't related to E.T., I mean. Can you see another Doctor there maybe? Also, advise the Doc, that this is where he can learn bits and pieces...

    My Doc wanted the web address when I mentioned it to her! If she has had the time to check it out, I don't know...but she is doing her best, I think.

    Oh, dear...the right people in the wrong place or the wrong people in the right place or the wrong people in the wrong place.. and the right people in the right place ..Now that is rare!:-)


  • Hi there

    To be honest I wasnt really suprised by his attitude as I read a few reviews about his bedside manner..

    I did mention this site but he wasnt interested, the internet has far too much information which isnt always a good thing, his words. In his eyes im too young to be at risk and as my platlets have dropped down to 520 im fine and everything else isnt related. Fortunately my GP is approachable so for my own piece of mind ill ask for a referal to another hospital ;-)

  • Holy Mascarpone! Well, you do know he can be reported to NHS via the web page?

    If he is that famous, or shall I say 'un-famous', he needs to be told.

    Anyroad, good luck with the GP!



  • Lol I will write a review. He retired in 2011 and works 2 days a week spreading joy im sure ;-)

  • I guess he could work Saturday and Sundays? :-))


  • Very true ;-)

  • Hi Katsy,

    I was impressed by my haematologist who said he did not know if my symptoms were due to ET, and at the next appointment remembered to tell me that he had looked into it and confirmed that they most probably were related.

    It is the little things that make a difference.

    Regards, Borage

  • Wow, hang on to that one ;-)

    Having read posts on here Its given me a better understanding than the 10 mins I had yesterday with a consultant

  • Hi Katsy, what an ....... of a man!! He is obviously arrogant and ignorant. How dangerous in his job. If you ask Maz, she can help with advice regarding referrals as well as your GP. Impressed with your haem - Borage. Kind regards Aime

  • I know exactly how you feel. As long as the blood levels are ok, all the other symptoms are e-relevant to my doctors. Don't get me wrong, I am glad I am quiet well at the moment, but for him to listen to me would be great and not just a 2 mins consultation. Every time I see him it like this, wish I could have the first consultant back, she was lovely.

  • I too have ET and positive for JAK 2. I still don't understand everything but am getting more info by sharing with those on this site. I noticed that in the UK ET is considered a cancer of the blood. My hemo told me that it is not. Maybe it is only that situation if you have myelofibrosis? If anyone know...it would be nice to get some feedback. I hope to stay in touch with you Katsy as we seem to have a little more in common with JAK2. Take care! Kristi

  • Hi

    I'm sorry to hear about your diagnosis and your experience with your haematologist. Having experienced something similar myself, I understand where you're coming from. All I would say is do not be put off by medical practitioners not taking proper notice of your symptoms. A bit of perseverance will eventually pay off, and hopefully will find either a GP or haematologist who can help you adequately.

    If it's of any help, I have experienced many of the symptoms that you are describing. I also had a battle, not with my haematologist, but with my GP for acceptance of my symptoms. Indeed, some medical practitioners treat MPD as if they were a bad cold whereas others are more aware of the debilitating nature that this condition can have. In my own case it is taken the best part of 18 months to find people who are willing to listen to what I've been going through. Currently I'm being checked to see if I have ME, as the medical staff at my hospital tell me that they have other cases where individuals continue to have the symptoms you describe despite treatments for MPD. Not suggesting that you have ME yourself, but what I am saying is not to disregard your symptoms if you continue to experience them.

    Best of luck

  • They are all signs as you have probably read-perhaps his wife just ran off with another man -change haemotologist s

  • Hi

    They probably are connected. Yes it sounds like you may want to try and get referred to someone else.

    Where are you based?


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