I have just been diagnosed with MPD. I am confused and scared after what I read on the internet.
can someone please help me understand better. So far I have no symptoms of any kind.
what should I expect from this desease ?
Thank you & Merry Xmass to all.
Hi Tornado - Yeah I know that feeling as do many members of this group. But please don't panic as there is reassurance and knowledge to help you here and fortunately you found it early on in your diagnosis. I wish this site was here when I was diagnosed in 2006.
Firstly, it's good that you have you have no symptoms and that could be because it's been picked up early or you are lucky and its a 'slow burner'. So whichever that is good news for you. Many of us have / had a number of symptoms at diagnosis.
You didnt mention which type of MPD it is as there are 3 main ones ET/PV/MF and CML is another. This can make a difference to the type of treatment you will need in the future.
More good news is that there are a number of new drugs available and in development for our mpd's. But for now I would spend a little time reading some of the Q and A's on this forum for your type of mpd but again don't panic because with luck you could be on 'watch and wait' for years to come.
I'm sure you will get many replies and good sound advice and encouragement from friends here.
Cheers JR
Hi Tornado, Please don't panic - everyone in this forum has been in the place you find yourself in just now and many members have lived for lots of years with their MPD. As JediReject says you will find lots of support and friendship from people here who really DO understand how you are feeling.
When you have medical appointments, go with a written list of questions so you get all your worries discussed and don't be scared to ask if you are unsure. If you visit the MPD Voice website you will get all the information about the different types of MPDs and you can email Maz, the editor to get a buddy to speak to or to ask questions (Maz will get answers from the experts). Every year there are forums where we get the chance to meet fellow sufferers and also ask questions of the experts (usually from all over the world). The path to diagnosis is scary and overwhelming sometimes and we have to deal with that along with whatever else life is throwing at us at that time.
Symptoms do vary a bit from person to person but I think the common ones are fatigue, itchy skin, sore joints, some people have night sweats but you will get lots of support and information from the others on this site. They are great people and the best thing I ever did was join the forum.
Take care, thinking about you. Best wishes Aime x
Hi Tornado,
Sorry that you have been panicked by your diagnosis - the internet is a double edged sword, it can give useful information but it can also scare you with inaccurate information, or simply things that are never going to apply to you.
I was diagnosed with PV 27 years ago, and these days it has little effect on my daily life, I rarely think of it.
We all seem to walk through our condition in different ways, so the symptoms one person gets another may never experience. Whilst it can be useful to share troublesome symptoms and get tips on how to manage them, it may be less useful to hear all about others' side effects of treatment for instance, before you start something.
There is much more research being done now and new drugs being developed.
Look at the Q & As... and remember that you may or may not get particular symptoms.
Good luck!
revfee
I hope this helps I have had ET for 30 years and its my 70th Birthday Boxing day .
It has not stopped me from doing things very much
Town Crier
Thanks catkinspolymer, wow 30 years that is amazing. This gives me some hope.
Happy holidays.
great...Where do you town cry/// we have a fantastic one in Ripon , North Yorkshire... Every night for 200+ years at 9 o'clock, if you get a chance go and see him hes funny informative and a great asset.
Hi Tornado - I've been diagnosed with ET for over 11 years and lead a completely normal life without any symptoms and only on aspirin. It is very worrying when you are first diagnosed but apart from my regular check ups it's something I've just learned to live with - the risks of it turning into anything more serious are very low and research into causes and possible cures is developing fast. the MPD Voice website is a great source of reliable information and support.
I'm sorry you are scared and confused by what you are reading. It doesn't seem to make much sense does it? But it will. Just hang in there. This stage will pass. I'll be thinking of you and wishing you a peaceful Christmas.
Caroleen
Hi Tornado,
Another who has lived with an MPN for many years (19). I was diagnosed with ET, when really very little was known about it. Thankfully, it has barely impacted on my daily life - having held down a fairly full on job throughout that time and having raised an 18 year old as a single mum for 8 of those years. For the first 9yrs I was on aspirin alone, that has been combined with Hydroxyurea (8 x 500mg tabs per week) for the past 10 years. I go for my check ups every 3/4 months and so far everything has been kept under control, which means I simply make the next appointment and get on with life.
As someone has already said in a previous reply, all the stuff we read on the internet can act as a double-edged sword, and when I first found the MPD Voice site about 5/6 years ago, my first reaction was panic, particularly when I realised that my condition was classed as a form of blood cancer. However, since then I have found that this and other sites can be a huge source of support and information. Often our conditions can be very well managed and the progress that has been made in recent years in both treatment and understanding of MPN's is phenomenal.
So, use them to keep informed, keep yourself as healthy as possible through eating well and keeping fit, in whatever way you find enjoyable. Hopefully, your experience will be similar to so many others and your condition will be well managed and you will live a full and long life.
God Bless and hope you have a really great Christmas.
Hi tornado, My hematologist is of the opinion that my diagnosis date has nothing to do with the actual length of time I've had the disorder. I've been on one med or another for about 20 years. Remember, when you read an internet article filled with doom and gloom, check the publication date. New protocols and results are being reported daily. Best wishes.
Hi Tornado, please don't worry, I was diagnosed with ET 11 years ago with no symptoms except a high platelet count, it has had little to no effect on my life. Just stay positive and stick to getting information from your Heam or from this site and ones similar to it. The internet looks at all possibilities most of which apply to about 5% of MPN sufferers it doesn't take into account any other factors like age, weight and general overall health. Eat healthy, exercise and keep positive and you will be fine. Merry Christmas and happy new year it will be a great one for you. Best Wishes Kirsty xo
Hi Onesolucky,
Thanks for your positive letter. I shall try & be positive like you at least for the holidays. I was just diagnosed so it is hrd to absorb at this early stage.
Thank you & happy holidays to you & your family.
Hello Tornado, as you can see by all the replies to your post, we are all very supportive on this forum, and we are here to help and support you as much as we can. It is a very scary time when you are first diagnosed, and it's hard to take in all the information that you read on the internet, but I would advise you to read the information we have on our website, and if you would like any booklets about your MPN please email your address to maz.cd@mpnvoice.org.uk, I can also send you the information about having a buddy, this might help you as a buddy is someone who can help and support you and they will have the same MPN as you so will completely understand how you feel. If you have any questions please ask, we will all do our best to answer them for you. I hope you now will feel a little bit better. Merry Christmas to you, Maz x
Hi Mazcd,
Thanks for your support. I might need another bone marrow biopsy. The last one was very painful with local antistatic. Do you know if it can be done under sedation?
Thank you,
Happy holidays
Hi Tornado, I'm not sure, you will have to discuss this with your haematologist. Best wishes, Maz
Hi tornado your reaction is nothing more than normal, I for one thought that my life was over before reaching my 50th birthday, that was 8 years ago! This forum is great, lots of support when needed and your questions answered by all different types of sufferers and specialists.
It's not always easy but you will get to know when a not so good day is taking hold and when your back to normal, there are changes to what you can manage to do each day but again you will find this out for yourself as everyone is different to their condition but ask your doctor and medical staff the things you want to know, don't depend on the internet, you only get a view of how bad things could be and not how they may be from there, life is not over, just a change you will need to adapt to but I'm sure you will be okay, best of luck and happy christmas!
Mick
Hi tornado, not much more I can add, I remember being scared and emotional, so much so that I done all the things I wanted to do, flew a plane and went fishing abroad as much as my budget would allow. 15 years later I'm still here and going strong, this is in no way the beginning of the end (as I once thought) just another life experience we have to deal with, although there are lots of common threads we are all affected differently. I was once told there is no such thing as a silly question, if you want/need an answer then ask.
Good luck for the future, ourlife
Hi Ourlife,
Thank you so much for the encouraging letter. I am still feeling scared but not as much as when I was diagnosed. I hope I will feel a little better as time goes by.
I am very tired as I am having trouble sleeping with all of this that is going on in my mind. Hopefully I will sleep finite.
Happy holidays!!
Thank you,
Tornado
Hi Tornado, how are you feeling? I know you its difficult to get further with tests and diagnoses at this time of the time - Christmas does get in the way sometimes! I hope you are sleeping better and not feeling as scared as you were in the beginning. At least you know now there are people still alive and kicking with their MPDs who have been around for quite a while (sorry guys, that wasn't meant to be an insult), some of them with very few symptoms. As someone else has pointed out we are all individuals and may not all experience our MPD in the same way. Hope you are feeling better and are looking forward to getting your MPD managed in 2015 so you can carry on with your life again in a normal way. Take care, best wishes Aime.x
Hi Aime,
Thanks for writing it is a big help.I am not as worried as before & I am sleeping a bit better. I am just taking it day by day. I wake early in the morning & go by the sea to see the sunrise, that tells me it is the bigining of a new day & I will make the best out of it. So seem to be doing better, it beats staying home like a mushroom & thinking about my condition.
Well thanks again & have a happy & healthy new year !!_
Hi tornado all I can say is I understand and you have found this site which is full of information and support I was three years alone till I found these lovely people I now feel I have support and information where are you situated there maybe a support group who can help also there is buddy scheme on here so you have someone to share with but the good thing now you're not alone please let us know how you get on
Hi Shelly 1960,
Thank you for your letter.
I find this site to be very supportive. Thamk God I found it
Have a good & happy new year.
Where are you situated tornado
I live on the island of Malta in the mediterrenean. No support groups here that is why I joined this one.
I understand but you do h Ave this group now and maybe you will come across to a forum and meet some of us in person if not Internet buddies is also good
That will be very hard to meet because I take care of my 93 year old mother all by myself.
Then you have us here to chat glad yoy found the sitexx
Hi Tornado I've read all the posts & nothing more I can say but , Were all here for you & ,each other you have been given some great advice , welcome to the forum that has helped me understand more about this rare blood disorder ,& I'm sure you will meet some wonderful people on here ,
There a wonderful bunch x
Hi Phelpsy,
Thanks for the support. I feel a little bit more at ease lately. I just have to except facts.
Have a good day.
An explanation for why I am fatigued.
Am I the last person to receive a shielding text?
I am hoping this can help someone
