Second opinion

Hi everyone I have got my appointment to see Professor Harrison on 30th May. I am excited and really nervous all at the same time. I hope I won't be wasting her time but my lovely buddy assures me I'm not.

I was diagnosed with MF last October. Bit of a shock to say the least! My bloods are ok so I am on watch and worry. My reasons for asking Professor Harrison for a second opinion is that most days I suffer dreadful fatigue for at least 4/5 hours, my body really itches after showering and my anxiety levels are at an all time high. My local haematologist doesn't seem to think these symptoms are connected to MF because my bloods are ok. I went and got checked out with my GP (who knows Jack s***) about MF sorry about French she even contradicted me when I asked if it could be connected to it she said "you haven't got MS have you" anyway nothing else was found so only MF left.

I am going to the forum in Leeds and really hope to meet more people with MF.

Sorry about the rant....

Janet x

16 Replies

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  • I'm so pleased for you. No, you won't be wasting anyone's time - it's your body and you deserve answers. Good luck with the appointment. I'm seriously thinking about a second opinion too but need to sort out my ill health retirement first!!

    I get different messages from different haems in the team and my GP knows Jack....... also but at least he admits it but he has been asked to comment on my PV for my work! Never mind sorry for the rant too. All the very best Aime xx😺😺😺

  • I work as an Occupational Health Nurse and am on the forum as I am trying to support a good friend who has MF- and am therefore trying to understand as much as I can about MF. May I suggest that if your employer or OH team are getting medical reports to support your application for ill-health retirement try and ensure you get one from Prof Harrison before they make a decision. MF is quite rare and will due respect to my fellow health professionals their understanding of the condition is likely to be limited. A helpful report from a respected expert in the field may make a difference to your application. Good luck!

  • Hi thank you for your informed reply. I was diagnosed last year aged 65 so was already retired. Your information is sure to help others in the same situation.

    Janet x

  • Thank you for your advice too.

    Kind regards Aime xx😺😺

  • Hello Janet,

    First thing - DO NOT BE NERVOUS AT MEETING PROF HARRISON. There is not a lovelier lady around. Also, her team are delightful and this is the one clinic that makes you feel so much better. I have MF too and I go to Prof Harrison's clinic and I might be nervous when I arrive at what I might hear and always leave with a smile. All the symptoms you mention are typical and for me the fatigue is the one I can't properly crack, but, hey ho life is still good and I feel content with my care. So please, be excited but don't be nervous you will feel so much better it will be a date to remember.

    Linda x

  • Thank you for that Linda. I suppose I could have gone to someone nearer home (I'm in Halifax) but I feel I already know Professor Harrison. I've watched her on videos in USA and thought "that's the lady I want to see". I will post how I get on, I'm sure it will be more positive than seeing my local haematologist.

    Janet x

  • Good luck with professor Harrison! I'm waiting to hear about an appointment still. Just want to speak with someone who understands and can explain what's happening now and outcomes for the future..someone who understands the fatigue.

    Take care

  • Hi Janet.

    I had my first appointment word Prof Harrison this week. Don't worry, she is really nice and friendly - she doesn't try and dismiss your symptoms.

    When I visited her there was also a French MPN expert who was "observing" her - he was really nice too and made a point of taking time to ensure everything was explained thoroughly and that I had no outstanding questions.

    It was a really good appointment - we discussed different treatments and their suitability (something my local haematologist wasn't really prepared to do) and I left with an action plan to deal with all my symptoms. Prof Harrison has agreed to write to my local haematologist and agree a treatment plan and I'm sorting out a couple of other referrals to investigate some other symptoms.

    I'm so glad I asked for the referral - these illnesses are cruel enough; trying to get by without the proper treatment is just making things worse. When I spoke with Prof Harrison about my fatigue (which is a big problem for me) she had some interesting thoughts and I'm sure she will surprise you a bit when you talk to her.

    One bit of advice - my consultant gave her a brief medical history when he referred me, but I took a years worth of blood test results (I have regular venesections) - she found that very useful. I'm sure your phlebotomy nurse could help you if you don't have a copy of your own results. Being a bit of a geek I keep track of my Hb, white cell count, platelets and PCV on a spreadsheet every visit.

    Good luck with your visit. I waited a few months for my appointment - she is mega busy, but it was so worth the wait.

    Cheers,

    Paul.

  • Hi Paul thank you for yet more helpful information. 50 min is a really good length of time.

    I will try and follow your instructions but it sounds like I'd better get my dear old laptop out of mothballs for this job. There really should be an app for this.

    I will let you know how I get on.

    Janet x

  • Hi Paul your reply is so gratefully received.

    Knowing what to expect before you get there plays a big part in having a good consultation. I am about to have my bloods done today so I will email my nurse to send a full list of all my blood counts.

    I am not as savvy as you and haven't a clue how to set up a spreadsheet on my iPad but I will try and do something similar. If you have any advice on that it would be great.

    Can you remember how long your consultation lasted? I always feel a bit rushed with my local haematologist.

    Janet x

  • Hi Janet. I was in with Prof Harrison for about 50 minutes I think. There was absolutely no sense of being rushed - she checked several times if I had any further questions or wanted more information about what she had told me. I think I was supposed to have my bloods done when I arrived for my appointment but no-one said anything other than to wait in the waiting room which I did until I was called, but as I had my previous results it wasn't a problem.

    To set up my spreadsheet, I use Excel, although Apple's own "Numbers" app or Google Sheets would do just as well. At the top, I have column titles Date, Hbc, WBC, platelets, PCV, whether I had a venesection or not and any targets (I have a PCV or haematocrit target of 0.4). The each visit I add a new line to the spreadsheet with that day's results. I added a few graphs so I could easily see when trends over time but that isn't really needed. It looks a bit like this...

    Date Hbc WBC Platelets PCV Vene?

    1/4/17 120 7.05 452 0.41 Yes

    15/4/17 130 6.85 425 0.39 No

    Sorry, it doesn't look very good here but it works for me. Hopefully you can find a solution that works for you - when set it up it took me a little while to type in all the results but I find it a useful reference and my various consultants seem to think it's quite useful too. Perhaps I should write an iPhone/iPad app to help people keep track of their results 😀

    Cheers,

    Paul.

  • The prof is excellent. l had some issues with my local haem like you and the prof helped straighten my path. I did have MF and had a stem cell transplant. Planning to go to Leeds to join the MF corner so look forward to meeting you Chris

  • You are definitely going to see the right person. Not only is she supremely knowledgeable but she is a kind and supportive doctor too. A rare combination! I am in the fortunate position of having been to see her and now seeing a haematologist who has worked with her so is more than willing to consult her on my behalf. It works well for me. I am sure you will find the right information on your visit. Write down all you want to ask in advance so that you don't miss out anything and if you are nervous take someone with you to help you remember what she has said. I actually jotted down notes after each written question and she was more than happy to see me do it. Good luck and I hope you get things sorted best wishes. Jan

  • Hi Jan

    I wrote down my questions and queries on my last local haematologist visit and he looked at me as if I had lost my mind. I think he just thought bloody hell ive got a right one here.

    I tried to tell him my symptoms but he more or less shrugged them off because he is under the impression that because my bloods are ok I can't be having symptoms. Then he went into all the negatives of taking ruxilinitib but at the end of the appointment he said but I can prescribe it if you want. Needless to say I said no.

    I want a specialist to say either I will benefit or I won't and there might be alternative ways to help me.

    But most of all I want someone to believe I'm having symptoms.

    Janet x

  • Claire will be pleased you have written questions so don't be put off by your local haematologist. I hope you get sorted. Best wishes, Jan

  • I will seek you out Chris. I am looking forward to going too.

    Janet x

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