I Loved the MPN London Patients forum tonight x

So glad I signed up ,

it was great to put faces to names .

I Watched it all with my Husband , it's a lot easier for him to hear from other people than me , talk about MPNs . Just hearing what we all go through at times Brings it all home , I think it done us both good ,

Me knowing I'm not going mad & that other people also feel as ill as I do at times ,

It give us both a better understanding of the desease ,

well done to all who took part ,

it was very interesting , x

Pam x

21 Replies

  • I agree. It was great. I live in Ireland so have never been to one of these meetings although one was held in Dublin a few years back. Unfortunately I was particularly unwell at the time and couldn't attend. I found the whole thing informative and like yourself Phelpsy was glad of the opportunity to hear others describe some very familiar symptoms. I can't thank the team enough for all their hard work, and also Andrew Schorr and Patient Power for live streaming. Thanks every one. Bruddery.

  • I agree I watched in from the south coast - it was very informative and helpful - I attended one last year at Southampton General my first introduction to MPN Voice and hearing of Patient Power and Health Unlocked - thank goodness a huge help and support ever since and learned far more than all my years of hospital appointments even tho I have good consultants.

    Many thanks to Andrew for his excellent service in bringing the event to us all

  • The live feed was such a relief for me. I was diagnosed 7 years ago with PV and ET and have never spoken to or heard anybody speak on the subject.

    I was very emotional to feel for the first time not alone, and that in general I have been very lucky with my side effects/symtoms.

    Thank you MPN Voice and Patient Power for the live feed.

  • Well said Pam. It is so good to know you are not alone and like you I was glad my husband watched with me and got a good understanding from others.

    Well done to everyone involved and thank goodness for this forum,

    Karen x

  • Hi. Could any one tell me if I can see it in some kind of catch up platform. I had signed up to watch but as I have 2 young children the timing didn't work out and I missed it. I haven't been able to go to any forum since I was fist diagnosed for the same reason.

    Many thanks


  • Hi titatagg, I wished i could have signed up to see it , but couldnt , yes i was wondering too if it was possible to catch up and watch it somehow ,

  • Hi Phelpsy, Pam , yes i wished i could have seen it , sounds very interesting and quite an eye opener theres still alot i cant get ti grips with re this condition , ans side effects etc ,most days i just dont feel right ,but cant pinpoint anything specific , it can be so many other things. like Anxiety, deppresion , tiredness no energy , cant be bothered ,gen aches and pains etc mindfield really , plus i want to chat with Gp about daily Asprin im sure it gives me stomach discomfort some nights i miss dose and tum okay ! i take Lansoprazole also to prevents stomach bleed / ulcers yet i know i need the Asprin !! best wishes Holly x

  • I know exactly how your feeling ,

    I went through the same , x

    Try to stay positive

    ( not easy I know ) ,But my Moto is >>>>>>>

    We have these MPNs they don't HAVE US , we are all here to help each other , I was in a dark place 20 mths ago But Now it's a Beautiful place , I have great friends in this forum like you also couldn't of functioned at times without there help Maz & Marylyn also helped me x when I had my TIA I was in Stroke ward My how I counted myself lucky It wasn't permanent, ❤️

    My loss of speech / feeling in leg & arm were only temporary THANK GOD , I pray your feeling better real soon

    Take care Holly I'm here if you ever need a chat , x

    ((are you on F/B))

    Lov Pam x

    Yes you must chat to your GP / Consultant aspirin can cause some stomach pains x


  • yes im on Face book, im ollie kinnersley most of my friends refer to me as Holly because i dont like my name ! I remember you saying you had TIA and it is very scary eh , ,and my Gp always had that concern for me ( family history) my brother has had quite few over years and heart problem in my family so theres concerns anyway in respect of blood clots he has AF i have mitral valve regugitataion , thank you Pam for your kind thoughts and support it was my consultant that told me about this site and i agree whole heartedly with what your saying God Bless you pet love Holly x

  • Hi Holly not sure what type of Aspirin you are taking. Generally they prescribe a dispersive or in coated type of Aspirin as it's the cheaper one. If you are taking that one maybe get your GP to prescribe a coated / gastro resistant Aspirin and see if that makes a difference. I suffer with stomach condition and take lansoprozole due to acid reflux(have Barretts) and recently read somewhere on here about the above.

    I believe there are alternatives too Clopidrel ( don't think I have spelt that right) is something mentioned on this site too. Take Care Liz C x

  • Great thanks liz got appoiment August 5th yes my brother mentioned

    clopidrel , he couldnt tolerate Asprin ,i take the disolveable one , hate it yuk! i feel it in pit stomach when i go to bed even though i take after eve meal take care x

  • All of us at MPN Voice are so pleased that you were able to join us last night, and don't worry if you couldn't watch the forum, a full recording will be available shortly, I will let you have the details of how to access it when it's available. Maz

  • Hi Maz all credit to all involved it helped me & my hubby so much , & I believe 1.000 more to ,

    Congratulations to all involved x

    1 happy patient this morning x

  • I was so excited at being able to hear all of the patients talking of their experiences and the specialists. It's good to know that these forums are held. I learned so much and was so surprised when it was over. I was so engrossed time flew by. It was lovely to put faces on so many of you. Thank you to everyone in organizing a live feed. Best wishes and gratitude to all. Bruddery.

  • Hi Maz

    Delighted to hear that the forum went so well. I was also unable to participate - as I was on holiday so I am pleased that a recording of it will be able to be seen soon.

    Will be looking out for it.

    Thank you

  • My wife (ET) and I thought the forum was excellent and thank you to everyone involved. It was amazing to be able to watch it on-line. Glad to see Twinkly there, smiling as always.

    We are all so lucky to have the support of MPN Voice and the community.

  • Great to put names to faces at the forum ..maz a vision in blue ! And the film crew .." I'm ready for my close up mr devil'e " !! Education is a wonderful thing ,,the more we learn the better we cope ..full of enthusiasm for our future ..keep on twinklin. Xx

  • Was great to watch the live link last night after not being able to go to the forum after all. Many thanks to all involved. Barbara

  • I had planned to go to forum as live in London but caught stomach bug earlier in week so had to cancel yesterday as still not well enough to go. Managed to watch most of it online from my I pad and found it very interesting and helpful. Will watch the bits I missed( due to inevitable visits to little girls room) when recording is posted. Hearing others experiences and how they dealt with it, lots of useful information about now and possible future treatments all great. What a great community we have. Thanks to Maz and all at MPN voice for giving so much time to organise this and to keep our vital forum going from strength to strength. It is so very much appreciated Liz C xxx

  • Hi Pam and everyone,read all replies agree it was wonderful to feel as if 'belonging ',

    Instead of the usual isolation that leads to depression and bad days of being unusual,poorly ,fatigued,yet not looking like a sick person,and all being hard to explain to friends and even family.Keep Positive all of you,great to have this site isn't it? Sally

  • I signed on for the live feed but when I tried to download the zoom I was told that it couldn't be done because my computer did not have certain programs. As a computer innocent I tried what I could but still no joy, so I missed the forum. If anyone knows what to do about this I would like to have it for the next live forum.


You may also like...