Hi All, I really wanted to ask a question which has a very important answer for me. If it turns out that I don’t have PV but an idiopathic erythrocytosis which apparently can migrate to PV and Hodgkin cancers, can I still take part in this forum?
I would miss you all very much and also the strong support network I’m lucky to be part of at the moment. Maybe Maz can clarify what the position is.
Kindest regards Aime xx😺😺
Hi Aime, I don’t know the answer to that, but we would all greatly miss you too. You contribute so much to this forum and whatever you have, you seem to have the symptoms and problems that we all suffer from.
I think maybe it’s up to Maz.
I hope you get your results soon and know what you’re dealing with.
Love
Judy xx
Hi Amie,
I had never heard of idiopathic erythrocytosis before and when I put it into the search box at the top of this page it took me through to another forum which was the brishish lung foundation and the symptoms do sound very similar.
I dip in and out of this site even though I have not been diagnosed with PV and you are always so supportive in your response to others and hopefully you will be able to contribute to both sites 😉
I wish you well and hope you get a solid diagnosis soon
Elaine x
Oh Amie, I do hope you get some answers soon - please don’t vanish on us - you are such a support to us all. xxx
Come on Aime. Does it really matter where our issues lie? Just let us all help each other no matter what eh? Lesley x
Hi Lesley, yes that’s exactly what I want to keep doing.xx😻😻
Amie, I am going through a similar situation. I have a couple of more blood studies to do before a confirmation of erythrocytosis of unknown etiology. Next Generation Sequencing revealed a couple of markers that are an indication. I hope that there is some way that we can still be a part of this forum. While I have not posted very often and I certainly have taken more than I have given, I appreciated all of the post and support that being here has provided. My journey has been long and difficult. The folks on this forum have been wonderful and very helpful. I continue the phlebotomies and aspirin therapy for now. My next appointment is Nov.30th. I have seen a Hematologist, an MPN Specialist and this will be the second MPN Specialist on the case. I am hoping for answers and my Christmas wish is to have a definitive diagnosis going into 2020.
Good luck with your diagnosis too. I hope you get a definite answer, I know it’s the tests and then the waiting for results always seems to take ages - but I suppose it doesn’t really! You take care and keep in touch. I’ll have more info after my consult on 19 November so will update everyone.
Kindest regards Aime xx😺😺
Hi Aime I hope you get answers soon and I would miss seeing your helpful posts so please keep in touch whatever happens best wishes Poppy
Hi Aime. I don't want you to leave either, you are always one of the first people to come to someone's aid when advice or support is needed. Your kind words and caring is invaluable to all of us. You have sent kind words to me on many occasions.
I do hope that you get your diagnosis soon . And send you very best wishes..
Hug to you.
Love Sandy X
Hi Aime, I really hope you stay. You, are as others have said, are a wonderful and steadfast presence on this forum. I don't know why you shouldn't have access to a valued support network, it just wouldn't make sense to me. And I would miss you and your kind words, encouragement and cat emojis!
I hope you get answers about what you have and that it will mean a possible treatment that helps you, and brings relief to you.
This forum wouldn't be the same without you.😿😿😿😿
Susan xxx
It wouldn’t bother me on the slightest if you stayed. We all rely on each other to help us through. You could well have a different illness. It will, if I’ve researched correctly still be a blood disorder. Maybe stay with us but also be part of a forum for I E. You never know we could benifit.
What ever you decide I wish you well.
Hi Aime. I also agree with all tgat has been said above. You arecalways one of the first to send kind words or advice. You MUST stay. Best wishes Catrin x
Dear Aime, everything said above is so true. You’ve been so amazing & we would greatly miss you. Have you looked at the other forum to know if they too are caring & supportive? If having IE (the other thing) is better for you, I hope that that is what you have. And if we have to lose you our sadness will be helped by knowing you having something better. Fondly. Katie
Hi Aimee, I don't think it matters if you have an MPN or not. I don't. But my lovely wife has, and this site has been a great help to me and Joyce. Even though she won't actually write on the forum, the information I get from all of you does help her cope with it all. And after all information is king. And as long as you can help you will always be welcome. Steve.
Hi Aime, I am not long on this forum but have seen you crop up so many times supporting others, whatever the outcome please stay x
Garry
Hi Aime, I am a relative newcomer to the site,I have seen many replies to others from you.I hope you stay on the forum as its obvious you are cared for and an important contributor to so many.Please keep it up and thank you..Marilyn x
Hi Aime , , , Forum stalwart (that doesn't sound very complimentary !!). . . It'd be like eating your chips without salt and vinegar if you went awol from here. Carry on regardless say I , , , you certainly get my vote - Chris (who by the way doesn't have MF post SCT so am I still eligible to respond?) X
yes you are x x x
Chris, you better stay on board too as you have so much experience that you can share with others as well as the fact you are such a courageous person with all you have come through - if I'm the salt and vinegar, you must be the chips!! Love to you and your wife Aime xx😻😻
Oh guys I don’t know what to say but thank you......... kindest regards to you All Aime xx😻😻
yes you can as you always give such lovely, good and caring advice to many people. Maz
Thanks MAZ for letting her stay‼️‼️👍👍
Thank you Maz. I didn't realise how much I need this forum when I thought I may not be eligible to stay on it.xx I'm happy now!!xx😻😻
I’m glad you got the response you deserve. I agree with all the comments. Please stay, no matter what. Xx
What great news Aime, we get to keep you & you get to keep us!!!! We are the most supportive, caring & kind group of people I’ve ever known. We are remarkable but you’re one of the best!! Katie
Please absolutely stay...you are one of us....and such a specially 'lovely one' too! Sending you love and best wishes and also thank you for always being so caring. Tinkerbell13
Hello Aime You have to stay as you give such good and comforting advice. I dont have anything wrong wih me but come on here as its our son who has the problem.Bye Gill
Hi Aime, Just to echo everyone else, I hope you get a clear diagnosis soon so that you can ensure you are on the best treatment and I hope there will be no problem with you staying on this forum. You are such a support to everyone and you would be greatly missed.
Thank you everyone, I’m really overwhelmed by your replies. You all help me and so many others. XxxxxAime 😻😻😻😻
I'm a bit late joining in on this (what with being on the other side of the world and all that!), but just wanted to add my "please, please stay!" I would miss you very much, I have really appreciated your comments, both in relation to posts I have made, and also the wonderful supportive ones that you have made to so many others too. You are a lovely kind person, and a breath of fresh air. So pleased that you have had such a great response from so many others here. Do stay! 
Peter xxxx
Dear aime, haven't been about lately but still been checking in on this wonderful forum. I echo entirely what everybody as had to say about you,you are a reall wonderful & caring person who always as either sound advice or just a kind & sympethetic word to people & i along with others would miss that! I hope you get a diagnosis soon whatever that maybe but more importantly for your own peace of mind. Sending you loads of hugs & looking forward to you keeping on contributing too! Best wishes tina🤗 xxx
Thank you Tico and Peter. Kindest regards Aime xx😺😺
Hi Aime,
I agree with what everyone has said already. You contribute so much and would be greatly missed.
Also, the uniqueness of your situation will bring much needed insight. As we know, there are many people who are ‘triple negative’ on this forum. The more research, feedback etc from people such as yourself can only be a good thing for all surely.
Mary x😺😻
So glad that you can stay, would miss you big time. Mel xx
Thank you Mel and Mary. I’m so glad I’m able to stay on the forum and I’ve got my list of questions ready for the haem on 19 November when I get my results. I will update everyone then. Kindest regards Aime xx😻😻
Aime... I'm in the same position. You are an inspiration to everyone. Xx
Sending E hugs because I know they help. Thinking about you and fingers and everything else crossed for you and everyone else waiting for results. Not easy, but we’ve got one another to lean on, no matter what!
Best not to dwell on what it might be, but be thankful for what it’s not. I’ve given myself a good kick up the b......, to remind me of my advice to others about not worrying about things which may never happen!
Kindest regards Aime 😻😻xx
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