New ET diagnosis

Hi, I was diagnosed with ET last week after jak2 +ve (platelets over one million)

I originally went to my GP one year ago with coccydinia (tail bone pain)

This progressed into left leg and hip pain.

GP gave me pain relief and anti inflammatory drugs (with little effect)

Returned to see GP and she sent me for X-ray of chest pelvis and back.

This then showed I have a migrated filshi clip in L5 of my spine and I also have sacroilitis.

This migrated filshi clip is from being sterilised 10 yrs ago

Then sent me to gyn as pv bleeding. Biopsy taken and still awaiting results of this but need surgery to remove filshi clip in future.

So in meantime platelets still elevated over one million and urgent ref to haematology who put me on aspirin and talked about MPN's, prognosis and symptoms (very scary)

I have an appointment in two weeks for a bone marrow biopsy and aspirate, really worried this will show fibrosis as in having so much leg and hip bone pain.

Hematology also sending me for a corotid Doppler and to see ophthalmology for silent migraines with flashing vision.

Oh and my GP also sent me for abdo/pelvis ultra sound which showed endometriosis and a cluster of cysts.

All this from me going to see my GP for a sore tailbone last year.

I am a staff nurse and little bit of knowledge can be scary.

I guess the main thing I am asking is can this bone pain be fibrosis rather than ET ?

15 Replies

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  • Hi Lainy, my goodness you are going through it at the moment. Welcome to our forum. Hopefully you will get more answers about the bone pain when you get the results of the BMB, and whether or not it is being caused by fibrosis. Have you had a look at our website mpnvoice.org.uk, it has a lot of very useful information on there, and also lots of videos of patients talking about their MPN and how they live with it, and videos of haematologists talking about the different MPNs and medications, have a look and see what you think. Let us know how you get on. Best wishes, Maz

  • Hello maz and thank you. I found the website very informative and other peoples posts reassuring. This time last month all I had was a sore tailbone and I now have all this going on. I have good family support and working for the NHS is an advantage too. Thank you for the best wishes lainy

  • Hey Lainy... :)

    Welcome to our little MPN club.

    My name is Steve, and I was originally diagnosed w/ ET in May 2016. My BMB, later showed that I had a grade 2 level of scarring. Hence, they soon reclassified me as Post ET/MF. However, I really was not enjoying either the Hydroxyurea (HU) or the Interferon alpha bi-daily injections.

    For me, both were giving me some rather adverse side-effects. The worst thing for me was the loss of mental clarity... Which, I am happy to report has largely returned under the Ruxolitinib that I am now taking.

    However, I believe that Maz is absolutely correct, in suggesting that it's best to wait for your results from the BMB, and then reassess your situation with your medical team.

    There seems to be so many differences between all of us here with our variety of MPNs, and what works for one might not for another etc...

    In any event, best wishes Lainy

    Steve

    (Sydney)

  • Hi steve, thank you for sharing your story with me. Can I ask a little bit more on how they score/classified your scarring with BMB and what I goes up to before it then changes to something else in categories. Any information appreciated as this is all new to me. Best wishes lainy (uk)

  • Hi again Lainy... :)

    Sure, I believe that there are two scales that are used throughout the world. However, the scale used for me, starts at 0-no scarring, 1-mild, 2-intermediate scarring, & 3-high level of scarring.

    I believe that once people reach Level 3, that acquiring bone marrow aspirations becomes nigh impossible due to the scarring. However, it is still for the experts to determine what it is that might be causing the scarring...

    I am no expert Lainy, just trying to bring all the disparate pieces of my particular version of MPN into a a clearer focus, if I can...

    Hence, I understand your need to want to try to achieve the same.

    I don't know what others do with all of their results, however, in my case, I keep track of them all in a statistics table that covers everything from: dates commencing & dosage of med's; symptoms under one medication as opposed to another; Blood platelet levels; Hematocrit & Haemoglobin; White cell count; Red cell count; Red cell distribution; Cholesterol readings, and of course iron & minerals watching etc...

    I figure that my doctors might change over time and the only person who is really responsible for knowing all that is transpiring is actually me! :)

    I also gain some comfort by being able to track my own journey...

    On having a BMB, I found that the pain was very mild after the process, and did not notice a thing during the actual procedure.

    I'm fairly certain that if you mention that one side of your hip is painful, that you should be able to have the process completed on the other... But just inform your doctor at that time...

    Best wishes Lainy

    Steve

    (Sydney)

  • Hi Steve, thanks for the information on the two scales that are used. Great advice about keeping a statistics table. It's a comfort to know that the BMB is not that bad. Once I have my first done for baseline results any future ones will not be dreaded as much (I hope)

    Kind wishes

    Lainy (uk)

  • Hi Lainy, Just a friendly hello from Canada--- I have ET and I've been diagnosed since 2015, and Im on hydroxy and aspirin. It sounds like a really worrying time. I think Steve is right, there are so many differences between all of us with symptoms and what works and what doesn't. I hope you get some good information from your bmb. All good wishes, Jean

  • Hi Jean, thank you for your kind words. How did you find the BMW for pain relief. I'm going to ask for everything they can give me. My left hip is one I have a lot of pain in so might say to use the other one ? Or should I have it taken from the one that is causing so much pain? I'm so confused and worried right now. Best wishes lainy (uk)

  • I was diagnosed with ET last year Jak2+. I had all sorts of symptoms, including foot and hip pain and what I thought were silent migraines.

    I can honestly say that most of these have gone since I have been on HU/asprin and platelets have dropped from 920+ to 230. I do get more tired though and a bit of brain fog, but still work full time.

    Plenty of water and stay positive

    Good luck

    Stephen

  • Hi Stephen, thanks for sharing. I will take advice of drinking plenty as I am due to fly soon and doc said yesterday platelets still high at 1122. Kind regards lainy

  • Hi Lainy, and welcome. Can't help re bone as I don't have that but I recommend you wear compression hose on flights and move your legs and feet around often to avoid blood clots. Katie

  • Hi Katie, thanks for the good advice. I am going to get some tomorrow. I've been taking aspirin for one week so with that and wearing those pretty flight socks I'm hoping I will be ok.

    Oh and staying hydrated too

    Best wishes lainy

  • Hi.

    My symptoms are so mild compared to yours. My platelets are 1112. so are high. I'm 53 have ET and am Calr positive. I suffer sciatica. have hip pain and migraines. I take asprin daily and know it's only a matter of time before I'm prescribed something stronger.

    I work full time 12 Hr shifts and get very tired. I'm told to avoid stress but working front line in emergency services makes that option very difficult. This site is wonderful and I've found it informative and educational.

    I hope it all works out for you.

    thanks

  • Hi heather, thanks for your reply. I'm still getting to grips with all this. I have no idea what calr is ? Is it a different type of mutation ? Yeah I agree working 12 hrs shift that is if u get away on time ! Nowadays stress is a part of the job within the NHS. Like you I have found this site very good for information and support.

    Thanks and kind wishes lainy

  • calr is another mutation. I'm not sure what it means but got told less likely my Et will change and less likely to have a thrombotic event. so that's sort of good news.

    I take it each day at a time. blame my hot flushes on my age ... 53. and stay calm with yoga and pilates when I can.best wishes

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