Are these symptoms in my head?

So, I've just had a fairly frustrating phone call with my doctor's office. I called earlier today, because I've had a rough time of it this past weekend. Pretty awful migraine, dizziness, fatigue and being more scatterbrained than usual. In a nutshell, the nurse explained to me that these aren't symptoms of ET and that I was probably just coming down with something. I don't think that's right. Reading posts here, I thought these were ET symptoms... Now I'm wondering if I've read symptoms for other MPNs and am just being a hypochondriac. Anyway, I just needed to vent a little and get these thoughts out in a place where someone might understand. Thanks.

21 Replies

  • How can it NOT be related? Ugh

  • That's how I felt two weeks ago minus the migraine. Platelets 625

  • That's what I thought :/

  • No you are not a hypochondriac my friend - all are what many of us suffer from - unfortunately the professionals often deal with the main things and not all the many many things we can put up with - I guess like anything in life if you haven't been there you don't know how it is. Frustrating for you today I am sure having that conversation. You did the right thing let us know we all get it!!

  • Thank you - that means a lot to hear .

  • Hi Jason,

    I totally understand your frustration. What you experienced are certainly symptoms of ET, so do not question your own common sense. Was the nurse you spoke with a specialist nurse in MPNs?


  • She is the nurse for my hematologist - she said they spoke before she called...

  • Hi. Sorry to hear that you are not feeling good. If it helps.. I get migraines which now come with vertigo. I was quite concerned the first time as the symptoms lasted on and off for 2 weeks. Since then I have had a coupke more instances but it does pass with my normal migraine approach: rest, painkillers, water and I personally need to keep my blood sugar up... I don't know how much is triggered by the MPN or whether it is unrelated. I hope things are starting to settle for you.

  • It does help! Thank you.

  • On my next visit to my gp after being diagnosed with ET at the hospital his first words were 'what's that '

    It seems that I know more about ET than my gp. Dizziness and headaches are indeed symptoms of ET so your nurse is talking rubbish.

  • Thank you. I sort of felt like she was talking without much knowledge, but I don't have much either, so I figured she was the expert.

  • Hello, I am sorry to hear this, as you say, a lot of people on this forum have spoken about these symptoms, a study carried out a few years ago asked 709 patients about their symptoms, 72% reported fatigue, 40% reported night sweats, 40% reported bone pain, 40% reported itching, 10% reported fevers, 9% reported spleen pain and 8% reported undesired weight loss, and Dr Ruben Mesa from the Mayo Clinic in Arizona carried out a study looking at symptom burden in MPN patients, he spoke about this at our Living with MPNs Day in 2015, you can watch the presentation he gave here.. it shows graphs showing how many people reported the symptoms you are describing. Hope you feel better soon, Maz

  • This is so helpful. I think I'll share it with my doctor. THANK YOU!

  • Hey 1972jwc... :)

    It seems that you have the message you were seeking...

    Yes, these are all MPN symptoms!

    If you are suffering a great deal from dizziness I would strongly suggest that you see your specialist ASAP! As that symptom could be a precursor to a stroke, heart infarction or TIA etc...

    My GP keeps telling me that I now know more than he does concerning my MPN. Yet only having been diagnosed in May 2016, obviously, I too have much to learn...

    Without any doubt my friend, you are in the right place to have these discussions...

    MPN Voice is such an epiphany...

    Best wishes

    Steve (Sydney)

    Post ET (pre-fibrotic) MF

  • I appreciate your thoughts, Steve. It is really nice to have a place to go where people 'get it'. Thanks!

  • Hi. Just thought I would chip in. I have an auto immune disease...a form of vasculitis...and they are my symptoms.

    I am not drawing any conclusions about what is going on with you. I don't know anything about the disorder you have. I just wanted to mention it to you.

    I guess anyone who has one type of disease could easily have something else going on at the same time. A lot of vasculitis sufferers I know have other things running in tandem. If the immune system is compromised other things can come into the picture. X

  • Thanks for sharing! I'll definitely keep that in mind.

  • You, me and all......! This is the way I feel all the time. I am with ET Jak 2+. Some days more intense then others but this is all the time. There are times i am in bed for days as a result of these combination of symptoms and side effects from medication....

    Wishing you well.

  • Thank you - it really helps to know I'm not alone and that someone understands how I feel. Misery loves company, I suppose!

  • Thank you all for replying. Means a lot to know that I'm not in this alone!! Happy to report that I'm feeling better - not back to normal, but much better. I appreciate all the support and well wishes.


  • Just wanted to add that I also get occular migraines and dizziness. They are classic ET/MF symptoms due to high platelets, baby aspirin helps but does not alleviate it completely. I also tend to be anaemic which contributed to the dizziness. Peripheral neuropathy is another one of MPN's "weird" symptoms. Unfortunately having a rare disease means we often have to educate health professionals about our diseases.

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