Newbie

[Lesleyt10]

Hi All - My first post here. I am just recently diagnosed with MF, in fact my letter of diagnosis (yes, I found out by letter after believing I had ET) was dated on 20 April, the day of my 44th birthday. Anyway, enough feeling sorry for myself. I live in Manchester and wanted to know if anyone knows of any experts in or around the Manchester area.

[JediReject]

Hi Lesleyt I sincerely hope there are coz Im due to be referred to Manc Royal as I also have MF and have requested a kind of 2nd opinion as I need answers. Like you I was 44/45 at diagnosis. . Im sorry to hear of your diagnosis as it is a shock and you're allowed to feel sorry for yourself. . If you have any questions feel free to ask away as like others on here I have worn several tee shirts out over the last 9 yrs.

Please don't worry too much as there is a lot more knowledge, better treatments and help available to us and this is increasing daily.

Cheers JR

[Loubprv Volunteer in reply to JediReject]

Hi Jedi me old china, good luck, the Salford Royal is supposed to be good too, or you could try the Christie where I go which is superb.

Louise

xx

[JediReject in reply to Loubprv]

Cheers Louise Im waiting for my appt ,,, I now feel I need a specialist insight rather than a generalist approach... You're a top lass X

[Loubprv Volunteer in reply to JediReject]

Absolutely, just how I felt! Wise move...x

[Lesleyt10 in reply to JediReject]

Hi Jedi - did you get to see a specialist at MRI? I had been recommended Fiona Dignan there or Tim Somervaille at Christie. Went with Tim Somervaille and get to see him next week. Just wondered how you got on.

Saw you were diagnosed over 9 years ago. How have your symptoms been since then? Do you know which mutation you have?

[Janet123]

I do not live in your area but I do feel your pain. I wish you the best. I hope you find the right experts to help you. Remember you are special.

Janet

[Loubprv Volunteer]

Hi Lesley,

Your diagnosis sounds as subtle as mine!

I was diagnosed with PV 6 years ago - the GP phoned me and said I think you might have Polycythemia. When I said, crikey what's that, he said " oh, just google it, you can find anything on google these days"

Great GP !

Needless to say I moved on....

Anyway, if I were you I'd beat a path forthwith to Tim Somervaille and Mike Dennis at the Christie. Centre of excellence in the north - why go anywhere else?

I travel down from Windermere every 5 weeks. The staff, consultants etc are all superb and I consider myself extremely fortunate to be a patient there.

I did, by the way, decamp from a haematologist at my local hospital, and can assure you that there is absolutely no comparison.

If you go onto the Christie website, you should be able to find Tim's or Mike's email address and email them directly - I emailed Tim and received a lovely reply - ending in " we'd be delighted to see you here at the Christie".

You can print off the reply and hand it to your GP.

Hope that helps, best of luck, maybe we'll meet one day - I'm 60 with curly grey/ white/ blond hair and always wear jeans!

Usually with iPad glued to my hip.......

Ps, don't be frightened - they'll sort you out and you'll be fine, ask about the Ruxolitinib trial. New drug that's having super results for both MF and PV.

All the best

Louise

x

[Lesleyt10 in reply to Loubprv]

Hi Louise - just wanted to let you know I did get in touch with Tim Somervaille and actually have my first appointment at his clinic on 24 June so wanted to thank you for providing me with a name I could contact. May see you there sometime in the future! Thanks again, Lesley

[Loubprv Volunteer in reply to Lesleyt10]

Fantastic! So pleased, he's an absolute sweety and uber good at his job- well I think so. The staff at Christie 's are just the best. Wishing you all the luck in the world, I' m due there this Wednesday.

Send me an email and let me know how you get on.

[e-mail]

Hope all goes well, I'm sure it will.

Love

Louise

[Loubprv Volunteer]

Ps me again!

Go onto the Christie website and just type in Tim Somervaille on the top search bar. It should take you straight to a link for Tim, where it will give you not only his email but his medical training - you'll see he is a specialist in MPN's which of course includes MF.

Louise

x

[Loubprv Volunteer]

Ps, sorry, you'll be fed up with me! If you haven't already, do look at

mpnvoice.voice.org

FANTASTIC support organisation ( charity) for MPN's started by professor Claire Harrison at St Thomas's London.

It will tell you everything pretty much you need to know - make sure you flip up the uk site and not the American one.

MPN voice organises really super forums round the country, the next one is in London on July 8th.

Usually 130 - 140 people, MF patients included.

Most certainly not a miserable " poor us" get together , but a jolly meeting of like minded intelligent folk who are all interested in knowing more. I shall be going, along with quite a few lovely people I've got to know.

I used to go with my husband but now go on my own because he usually ends up being deserted poor chap, whilst I beetle off to natter and have a laugh!

If you'd like to link up just email me on [e-mail]

Another website is patient power.

Started by Andrew Schorr, the most delightful man who also has MF. Andrew and his wife Esther, came to our home to interview me and my husband about 15 months ago, and who works tirelessly for patients all over the world who have certain illnesses, bringing them information and links to specialists. As he says, knowledge is power.

Hope all my prattling helps.

Louise

x

[daisystar]

Hi Lesleyt, Louise has already told you all you need to know. Christie is indeed excellent. I go there to see Mike Dennis. I recommend that you try it, you can always change if you are not happy. I hear that MRI is also very good. Fiona Dignan has been recommended to me in the past. She specialises in MPNs and trained under Claire Harrison, as I understand. You have choices in Manchester. If you would like to meet up for a chat, do let me know, I am based in Manchester, too.

[Lesleyt10 in reply to daisystar]

Thanks Daisy, I am due to see Tim Somervaille soon. Meeting up would be really nice. We should try and do this. Lesley x

[daisystar in reply to Lesleyt10]

Hi Lesley, great to hear from you. I'd love to meet up. I live in Didsbury, not far from the Christie. You are very welcome to come to my house for a cup of tea on one of your appointment days, or we can meet up on any other day, if this is what you'd prefer. Let me know what suits you best and which day is most convenient to you. Look forward to meeting you. X

[Lesleyt10 in reply to daisystar]

I will be going to The Christie with my hubby on 24th but would love to meet up another time. Probably best to add me as a friend on Facebook and then we can DM. My facebook name is Lesley Thompson was Rainey. Speak to you soon! x

[linds]

Hello, you have so many super replies I nearly did not add mine but thought in the end that I should. I was Polysythemia diagnosed for two and a bit years and then out of the blue was told that it looked as if I had moved on to MF. It was a shock as I was quite ignorant of MF just thought it was 'serious'. My haemetologist at the time said she would like to ask if Prof Harrison at Guy's would see me. The answer came back that she would and that was my lucky day.

Cutting a long story short, after a while I was placed on a trial (my choice, no forcing) and I have never looked back. It is the Rux trial and I am so well. I do get the tiredness but I have learned to cope much better with that myself. I did get quite anaemic and have had two transfusions of red cells and there is nothing to worry about that if ever you need to have one. My spleen which was quite large 24cm has shrunk to 9cm.

I think what I am saying is there is certainly life, good life, after an MF diagnosis so good luck and keep in touch with this forum.....so comforting and cheery when you need a little boost.

All the best, Linds x

[Lesleyt10 in reply to linds]

Thanks Linds - so good to hear there is life after MF diagnosis - something I am learning and great to hear from people who are not just living with MF but surviving it x

[Hughesf]

Sorry to hear that you where informed by letter.

I was diagnosed 2 years ago with PRV and had a similar situation.

Advised by letter to make appointment with hematological department at Crewe Mcmillan centre. That was scary.

All the best for your future and be positive.

Frank

[MFBMT2011]

Hi Lesley. I see help is already at hand. Don't know about your mobility but the next MPNVoice forum is Cardiff on 14th May and then Inverness in June! 😀 and yes London in July. I was diagnosed 5 years ago and had a stem cell transplant (SCT) 4 years ago. Yes there are drugs to control the symptoms that work well as you can see from above but SCT is the only current cure. Suitability depends on general fitness and health and the MF itself, as it can develop quickly or slowly; that will be assessed by specialists. It is too early to guess what direction you will go in. I just wanted to make you aware that there are options. Should SCT be in your future then I will be around to help with questions etc. good luck with your investigations.

Chris

[Lesleyt10]

Thanks everyone. There is some really good information on there. I have already contact MPN Voice and in fact have registered to attend the Forum in London in July so look forward to meeting some of you lovely people there.

Thanks for all the names and recommendations as well. That is really helpful.

I have to say that although it is a very frightening time I can't believe the help and support the MPN community give each other. I am blown away by how friendly and ready to share everyone is and although this is not a journey I would choose to take, so glad I have such a great community to travel with x

[babbittybumble]

Hello, Our son also has PMF diagnosed at 37 , eight years ago now. Luckily, he is really well and only on Aspirin. Having a Consultant who really cares about him and has a dedicated interest in all MPDs has made a massive difference for him. Take care .

[Norar]

Hi am also new & in Manchester resentley diagnosed mf after ET fo 14 years.I attend Bolton Heamatology,

Although resentley diagnosed I was also told I have properly had it for about 3 years,& have been sent to transplant clinic.woorried is the word