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My wife has been semi diagnosed with a MPN/MPD and scared

Hi,

I came here because I'm so scared. (I know it's my wife who has been diagnosed and should be the scared one) I didn't know where to turn because were basically in limbo until her hematology appointment comes through.

Basically she had a full blood count done at the gp and it came back that her red blood cells were elevated so they ran it again and it said the same. The gp forwarded the results to the hematologist via writing to them and they replied saying she needs to be seen as they think it's MPD/MPN.

Well as always Google is my worst enemy and I'm terrified I'm going to lose her. We've just had a baby who is now only 8 months and I'm worried he's going to be left without his mum.

I feel so helpless and can't think for worrying and it could be weeks until we get to see someone. (I say we because my wife and I are basically two halves of a whole and do absolutely everything together).

I'm so scared they're going to tell us that she is going to die.

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Hi ItsJustMee, first calm down as the high count may be due to other reasons.

Even if it is a MPN it may be a mild case. As you may have seen there are people here that have had quite serious cases for decades!!!

Stay away from Google until it is confirmed that your wife has a diagnosed MPN. I have found the USA websites/ searches, for some reason seem to paint the worst picture of MPN’s so probably best stick to the NHS ones for information. But the best advise I can give is try not to worry. I hope your wife turns out to be fine.

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Maybe learning certain facts about MPNs will help you relax and support your wife. High red cell counts suggest that she has polycythemia vera. People with PV have a normal life span, on average, with quality of life issues. Treatment focuses on avoiding disastrous clots and control of symptoms. This is a mostly managed, rare, chronic condition. Once the diagnosis is complete the focus will be on establishing a close working relationship with a knowledgeable hematologist.

This is not a death sentence. It does not mean you won't have more children. It need not damage your relationship with your wife and may bring you closer together.

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As someone said to me, “you will die with it...not because of it”

Xx

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I really do hope so, the plan was to be old together. (currently 34&35)

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Ah, I am sure you will 😁 Xx

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Thank you so much for your kind comments, I just feel in such a mess because I'm holding it all in to seem strong for her and to comfort her.

As far as I could see there were no other issues on her blood tests except higher hemoglobin volume and her red cells were slightly smaller than they should be.

She's doesn't really show any symptoms except she was complaining of dizzy and fatigue hence the gp to begin with.

I'm really hoping for the absolute best but can't help but fear the worst, I just love her beyond words so it kills me to be so helpless.

Thank you for sparing your time to make me feel better about things. I really hope everything turns out OK like you say.

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Hello 🙂

Just wanted to chip in and say, firstly so nice to hear you speak of your love for your wife! Secondly... please try not to be so scared, it is a worrying time for you both, but to echo what others have said, having an MPN in most cases is manageable, and we do live near to normal lives. Even when symptoms flare up you learn to sort of deal with them.

I have Polycythemia Vera, and was diagnosed January 2017, mine was found through simple blood test to find out why I was so tired all the time, dizzy and bone pains and stomach ache!

And although scary at first, after learning as much as possible about it all, (though NOT by looking at DR GOOGLE), best way is to ask Maz the Administrator on here if she can send you some info on it all!

You will feel much more in control, and understand that there's so many ways your wife can alleviate some of the symptoms, even just a little bit helps!

One thing you will read a lot on here, is DRINK LOTS of WATER!

It helps the fatigue, if I don't drink 2-3litres of water a day I feel the fatigue, sometimes quite badly!

So until your wife gets her appointment, go on websites like MPNvoice (the best in my opinion), Bloodwise (NHS), but steer clear of google!

Educate yourself and don't be afraid to ask LOADS of questions at her appointment, in fact write stuff down, don't come away still wondering about things!

There are lots of sides to an MPN, and your wife's symptoms and blood results could be all down to dehydration! That's what they initially thought I was suffering from.

And even if she has an mpn it's not a death sentence (as said by charl17).

And come on here whenever you want to, this forum has the loveliest people, that have a wealth of knowledge, and will always help you, they helped me when I was scared 😊

All the best to you and your wife, to have good results and not be so worried!

Big hugs 🤗

Jacqui

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Thank you for that Jacqx17. I will definitely get her to start drinking plenty of water. I really do hope it's nothing serious but it helps to know its not a death sentence, I just want to be able to grow old together and were only mid 30s at present.

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Please take comfort from the people on this forum. I felt devastated when diagnosed with MPN and got so much support here that I realised there is lots of living to do! With the right treatment plan most of us here are living a long and fulfilled life . There may be a few stumbling blocks along the way but things do improve . Please don't panic and stay positive ...Wait until you get a diagnosis and things will be clearer. As mentioned in a previous reply there are lots of members on here that have had an MPN for many years .

Stay in touch with the forum you will find lots of support here for you and your wife

Best wishes. Pippa

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I am really hoping for a long and fulfilled life with her, I really am. Its just a case of hear the name of something, Google it and find out lots of horrible things until I felt like I was going to lose her and were only still young with a baby.

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Hey - my husband was diagnosed with an MPN in late Feb and we’re still awaiting a bit more info. We also have a baby so I can really relate to all the anxiety!

Waiting is really hard but I found info from Bloodwise really helpful on MPNs (he has ET) and the haematologist has basically said this will all be old news soon and less stressful. I still get very anxious but mostly okay. Reading messages from people on here that have had an mpn for years is so reassuring.

I’m hopeful that since he is so young (32), researchers will have found even better ways to manage or reverse these conditions by the time his health is more fragile.

Good luck. Hug your baby - it helps.x

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Which was he diagnosed with if you don't mind me asking or is that the extra info you're awaiting?

What did you mean by "all be old news soon"?

My wife is around the same age (34), which is why I was so worried, we've barely been allowed a life yet (although we were married as teens).

I'm just finding it hard to eat and sleep for worry and I feel selfish for feeling like this when it's not even me in the position of having this. It's nice to know I'm not the only spouse/partner of a sufferer though as I thought originally I might get ranted at for being selfish.

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There’s no right or wrong way to deal with this stuff - it’s a shock! Not selfish at all!

My partner has essential thrombocythemia and is now taking hydroxycarbomide (3g a day) to help.

I think the old news thing just means that it’s a shock at first but once you come to terms with the diagnosis it shouldn’t really have a big impact on your life. Maybe think of it like heart disease or diabetes? A condition people live with and manage carefully.

Everyone is different though - take your time and don’t apologise. I referred myself for counselling so that I don’t put too much stress on my partner - maybe it’s something to consider.

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Hi there. I really feel for you and can relate to you because I’m the ‘other half’ of someone with PV. I remember the STRAIN of seeming cheerful and keeping upbeat for my husband’s sake while I was actually crumbling inside. Anyway the main thing is that it’s not as bad as you think!!! The idea of death was the scary thing (and yes, Google was a bad idea.... with horrible phrases like ‘life expectancy’). However I very soon found out on THIS wonderful forum that there’s no need to panic. I heard from people with MPNs who have been living with it and managing it for many years. Echoing what others have replied to your posts, it may not even be an MPN, so just breathe... and read stuff from this website only. That’s my advice anyway. Do something nice for yourself. Confide in a close friend. The strain of keeping cheerful is definitely one of the worst things I remember! And now it’s ok... we’re living with it fine. You will too, if needs be. The very best of luck and love to you and your family. X

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Hi MarybellM. Yes you're right, Google is not good at these times and the thought of death and life expectancy is what worries me the most. I just want a happy long life of raising our child and getting old together in the process.

What scares me the most is that nothing is diagnosed yet apart from a hematologist looking at her blood test results via our gp. I don't think our doctor should have even mentioned the words MPD to her at this point, seems very cruel. I just really needed to hear that she's not going to die, everything else we can deal with as it comes.

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I hope you’ll get the answers soon. You’ll get lots of support on here.

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Hi there. Lots of good advice here from others. All I wanted to add is that the time around diagnosis can be a time of enormous uncertainty, stress and anxiety. There is a huge amount of MPN ‘noise’ in our heads. However, as someone else said it does become ‘old news’. The MPN noise begins to fade into the background and the noise of day to day life returns to the foreground. Beware Dr Google! Stick with MPN Voice! Once you get a confirmed diagnosis and a management plan you’ll find the whole PV business gets very boring and you’ll want to focus on living life and growing as a family. Let us know how you get on.

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Hi itsjustmee,

I just wanted to chip in and say you sound really lovely. I'm 37 and was diagnosed with PV about 5 yrs ago. Diagnosis was the best thing for me as I was treated (initially venesections and aspirin) and the migraines that plaqued my 20s disappeared!! I, too, googled to start with, and scared myself silly, but actually it's a disorder that can be managed and those clever medics/scientists are learning all the time. If you're in the UK, the MPN voice forums are brilliant... They really gave me and hubby much more insight than the doctors (also fab but don't have as much time). Wishing you both all the best, Han.

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Hi Han, thanks for that. So after reading all these PV replies including yourself is it just a matter of living a full regular life but on occasion having to do venesections and depending on certain levels taking aspirin/other meds?

I'm really glad I found this place, I actually slept last night.

Ps. Yes were in the UK (South Yorkshire).

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Oh we're near in North Nottinghamshire! I go to Sheffield for haematology care. Yes, my life is pretty regular :) I see my haematologist about every 8 weeks and we just keep on top of things. Glad you slept :)

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Small world :)

I was thinking we might end up going to Sheffield too but by the looks of it our local area hospital (Barnsley) has a good hematology department so will probably be there to start out. Just a matter of waiting for this appointment phonecall to find out.

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Yes it’s worrying you are a young couple with a baby. Time to enjoy being a family.

No matter what is said to you you will be scared.

The waiting is the worst.

All I can say is your wife is extremely lucky to have someone so supportive to seek out this site.

No doubt many people will reply to you. Hopefully those with circumstances closer to you. I’m a lot older.

Good luck

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I'm not sure if anyone understands these much but these are my wife's latest counts as of this month..

FULL BLOOD COUNT

Haemoglobin concentration 158 g/L [119.0 - 149.0]

Above high reference limit

Total white blood count 6.90 10*9/L [3.7 - 10.0]

Platelet count - observation 233 10*9/L [150.0 - 450.0]

Red blood cell count 5.69 10*12/L [3.85 - 4.9]

Above high reference limit

Haematocrit 0.45 L/L [0.35 - 0.46]

Mean cell volume 79.8 fL [82.0 - 100.0]

Below low reference limit

Mean cell haemoglobin level 27.7 pg [27.0 - 32.5]

Mean cell haemoglobin concentration 347 g/L [316.0 - 365.0]

RDW 12.9 [12.2 - 15.4]

Neutrophil count 3.7 10*9/L [1.7 - 6.6]

Lymphocyte count 2.3 10*9/L [1.0 - 3.0]

Monocyte count - observation 0.3 10*9/L [0.2 - 0.8]

Eosinophil count - observation 0.5 10*9/L [0.0 - 0.45]

Above high reference limit

Basophil count 0.0 10*9/L [0.0 - 0.1]

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Hi itsjustme, your numbers look good to me. I’m not a doctor but I was also interested in learning what all my numbers meant. Google taught me a lot about understanding the terminology. Once I learnt a little I then started confirming what I’d learnt with my GP and haemo. I was lucky to have professionals who were happy to answer my questions.

Please remember what the professionals are looking for is a trend going up or down. A one off test means very little and can be influenced by many factors.

Hope you enjoy your Sunday.

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Thanks for that little bit of confidence and hope Eleanor. I'm really hoping this turns out to be something mild but I'm finding it difficult not to think about the absolute worst with being in the unknown waiting period at the moment, especially with all the mentions of the C and L words on Google etc.

I really appreciate your input though.

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From my experience. Anything permanently going wrong with my body was a shock and overwhelming. The c word is more difficult for the family. After 3 years since diagnosis l, The way I tend to think about it is: I’m glad I will have my blood monitored for the rest of my life. This has the positive potential, as I get older, for doctors to find hiccups quicker.

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Not having access to information is what scares the newly diagnosed. If your wife had been diagnosed, let's say, with diabetes, would you be as scared? Probably not because you know several people amongst your friends and colleagues with this condition and you would know how to manage it. I have not heard of anyone who has died young as a result of an MPN.

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Thank you it really helps to hear that.

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Dr google certainly heightens any anxiety! I would stay well clear for now until you know what you’re dealing with.

Importantly, your wife hasn’t had a diagnosis yet, so as hard as it is try and remain calm. If she is diagnosed with PV; the facts are MPNs are defined as ‘chronic conditions,’ in medical terms chronic means ‘long term.’ She would need appropriate treatment such as venesection, aspirin etc. As long as she’s monitored well she should lead a normal life. Research is ongoing into MPNs and new treatments are coming to the forefront all the time. There is great hope!

MPN Voice is a great website in the UK for you to peruse if your wife is diagnosed with an MPN. It has a ‘buddy’ scheme both for patients and partners, which you may find useful.

Mary x

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Thanks Mary, it really helps to read that a normal life can be bad with good management. Google just makes this disorder sound like a ticking countdown and it just scared the hell out of me.

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Hi there, sorry to read you feel so worried. I just wanted to let you know that I was diagnosed with an MPD nineteen years ago, my youngest child was seven at the time and I was desperately worried and afraid. Just breathe, it is hard waiting for appointments. Take care and if you need any more support you will find it here.

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Thank you Bob for your reply, it's really good to hear you are doing so well 19 years on. It certainly relieves some of the anxiety.

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Hello, itsjustmee. It sounds like you have a wonderful relationship with your wife. When I was diagnosed 11 years ago, the first thing my doctor told me was not to look at google. Since then, there has been a lot of research and awareness of this rare disease and much more information from MPN specialists around the world. The advice and support you’ll find on this site is invaluable. Also I saw your numbers and your platelets are in the low range which is usually not a sign of an MPN.

Good luck to you and your family. I don’t think things are as bad as they seem.

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Thanks Cja1956.

It's reasurring to hear these things, and after reading different things on this forum I did think myself that the blood results seemed on the good side of whatever it is due to the platelet and hematocrit levels. Just concerned with the red count and cell size mostly.

Got the appointment letter today saying they will call us with a hematology appointment in the next few days, so hoping they will figure out what's going on once we get there.

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I have had a MPN for over 30 years with no serious symptoms. What was Essential Thrombocythemia (JAK2+) progressed into Polycythemia Vera about 6 years ago. The most significant issue I have had is Stage 1 hypertension. The good news is that once I started phlebotomies, my BP dropped from average 135/95 to 115/75. Please hear from all of us with MPNs that the condition can usually be managed and the issues your wife may face will likely have more to do with quality of life than length of life. Do be aware that not all hematologists are equally knowledgeable about MPNs. Finding a doc who is an MPN expert is really important. Here is a link to some patient-recommended docs mpnforum.com/list-hem/ . All the best to you and your wife. Try to relax and not sit on the panic button. Go out - have a pint - have some fun - and enjoy life. An MPN is not a death sentence and life is too precious to waste worrying.

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We do not live near any of those places (in UK) so what happens in that situation?

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The haematologist that you are seeing at your local hospital maybe just fine. See how you feel after your Consultation you can always change afterwards if you’re not satisfied.

Not all haematologists on that list are MPN Specialists. They are few and far between! You mentioned Barnsley, so I think you’re nearest MPN Specialist would be Tim Somerville at the Christie in Manchester.

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This is the only listing like this that I have found. The closest MPN Specialist I found was close to 2 hours away from where I live. This doc now serves as a consultant on my case, providing expert input to me nd the hematologist I see who is closer to me. It is totally worth the time and effort to travel for this. I would go twice as far. I only need to go about once a year to see the MPN expert doc. It is important to have a regular treating hematologist will to work with a consultant. Not all will. In my view, a doc who is not willing to put aside his/her ego to do what is best for the patient is not a good doc to provide my care.

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My heart breaks for you it really does I have advanced mf and my hubby is finding it really tough to he’s had a few years experience and if you need someone to talk to Iam sure he would understand where you are coming from I know it’s hard not to but you need to remember that each case if different and there is tablets or transplant don’t give up I was diagnosed at 24 my son was 6 weeks old so I know how you feel 10 years and Iam still here if you need to talk please feel free contact me anytime good luck xx

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Thank you for that offer Leigh but I'm not sure it would help so much at the moment, I still feel in that irrational fear state at the moment what with being in the dark awaiting a hemo appointment and fearing the worst rather than using logic and seeing that it doesn't actually look so bad numbers-wise. I keep worrying that because there is no diagnosis yet, the hemo is going to diagnose something untreatable/unmanageable, especially with all the things Google mentions (I know I shouldn't have looked but I needed info and the scary stuff seems to come up first).

I know it's probably irrational but it won't shift.

Im not putting any of this fear/burden on my wife though as I've made her feel quite relaxed about the whole thing after finding everything out on here, just hard to stay strong when inside I feel absolutely terrified.

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Hi, another thought. It might be a good idea to contact your GP and ask for reassurance and a possibill time scale for your wife to see a haematologist. Also some of the cancer centres have good helpful support. I didn’t have this wait as my haematocrit was very high when my initial blood test was done.

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Hi there, you remind me of myself just after I was diagnosed with PV in 2015. I had hideously high red blood counts which took my blood pressure to 235/136. Together that meant thich slow sluggish jam-like blood that crawled around my system causing a series of mini strokes. Fast forward 4 years, I am pretty much symptom free, have 2 young kids, and run a successful business. I'm 44 now, I am still the same person I was before and my condition is managed very well by our wonderful NHS. Once you have the information you need you can start to adjust. For now, you are still adjusting to having a third little person in your lovely family. Frankly I found the two become three adjustment huge! Not sure I'm used to it 11 years in. The PV/MPN on the other hand? Just a few months. Don't let this take your enjoyment out of this magical time. Your lovely wife needs to keep looking both ways while crossing the road, she's going nowhere soon Im sure of it! 😀

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Thank you for that lovely reply johoho, I've been feeling so low today struggling to comprehend a life without my soul mate. This picked me up a little hearing how well you are.

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I'm glad, good to hear. I'm serious, don't miss out on this wonderful time, your wife and your little one need you to love them, be with them and enjoy them! You're future WILL be just great as anyone else's, full of ups and just as many downs, totally normal in other words! Much love to you all. X

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If it helps, I was diagnosed around the same age with ET, very high platelet count . Im 45 now and only just stated on medication two months ago. If it does turn out she has an MPN, considering her age, I think she will be fine for a long time...just as long as she looks after her health. Good eating/sleeping/exercise habits etc.

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Thank you BloodZero. I really hope you are right. Do you know at all if there is much difference between ET and PV except for different counts?

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I dont know alot about PV. My understanding is that in ET the platelets are high wereas in PV the Red blood cells are high. Either way the outcome is similar, blood is too thick.

Thats why having good health will help reduce symptoms and likelihood of blood clot. Cholesterol and blood pressure are things to now take control of (if she is not already doing so).

All the best.

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That's what we're currently doing. Is there any particular foods that should be avoided do you know? At the moment (as we both eat the same) we just eat things like lean meats, fresh fruit and veg, low fat yogurt, wholegrains and cholesterol lowering drinks/butter.

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Sounds like your on the right track. The only things i would change is ditch the low fat yohurt and go with regular yogurt. Greek preferably and avoid sugar like the plague. (LF yogurt has higher suger). Which includes soft drinks, sugar in coffee, biscuits etc. Personally i feel worse when i eat things with sugar and white grains also. You dont want to add more burden to the body.

If you need a plan, In my opinion Paleo is pretty much the way i eat. As a treat I allow myself 1 square of 90% cocoa chocolate per day.

There have been times i have gotten lazy and deviated for a month or two and i always regret it. In fact, i believe the reason i deteriorated to the stage that i needed treatment was for that reason. I went overseas and ate so much bad food. And when i got home continued to do so. My fatigue increased, my performance at work decreased. I got often got cramps and pain in my spleen. Got Gord and pancreatic attacks (which no one could find a cause). This affects my sleep. This all within the space of 3 months.

So set yourselves on the best path now for a good future.

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Wow that's very detailed thank you for taking time to write all of that.

The thing I wasn't sure about with regards to sugar was things like sweetener and honeys. Which do you tend to use? If any at all.

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My pleasure. When i get some time this week ill show you an easy way to navigate food. I like to keep things simple so developed a simple way. But to answer your question, i dont use sweeteners either. It can be very hard initially to get away from sweet things, but i found my taste adapted over time. Now my sense of sweetness is heightened. I occasionally have honey for its antioxidants. If i really need a sweet fix i stick to fruit. Oranges do it for me.

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Oh thank you that would be very helpful. I've recently bought some acacia honey for its antioxidants so I'll get her to stick to that (no pun intended) :)

She's also been having a daily morning homemade smoothie (strawberries, blueberries, banana and avocado).

I showed her the Paleo idea and she likes it apart from the lack of wholegrains and potatoes as we usually have wholemeal and rye bread for lunch and potatoes with dinner.

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I think wholegrains are fine. I rarely have bread or crackers or anything these days.

Someone people use bread and rice as a filler, but you can each as much veg as you want...till your full. So no need for bread. But i will admit, a sandwich or wrap is a very handy meal.

My view of the potato things is as long as it veg its ok. As long as your not having potatoes every meal.

Ill contact you later this week.

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I was diagnosed in my 20s when I had a baby the same age as yours after spending the last 3 months of my pregnancy in hospital having tests. I had another baby 2 years later. Now in my mid 60s, I had a wonderful day yesterday with all the grandchildren. Most of us have a good and long life after diagnosis. Good luck to both of you.

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Thank you for that asacker, that's a lovely bit of inspiration. Which MPN were you diagnosed with? And does a diagnosis of ET over PV make a difference to life?

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I started off with a diagnosis of PV. This was changed to ET about 30 years later. We know lots more now. Prognosis is good in both cases once diagnosed as then counts can be kept down and the scary things you probably read about are prevented.

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Thank you again asacker, knowing this makes me feel a little more at ease.

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Hi, how are you and your wife feeling now, hopefully a bit calmer after reading all the replies from the lovely people on this forum. I can't really add anything, but will just say, read the information on our website mpnvoice.org.uk and look at the videos we have with patients and consultants talking about MPNs, and also read some of the real stories, I am sure they will help you both, we have a lot of very good, useful information on our website, including past issues of our newsletters, and all the information has been written by world leading MPN specialists, specialist nurses and MPN patients, so it is entirely focused on MPNs, and all the information is correct. Some of the information you may find on Google may not be accurate and out of date, there have been many advances made in recent years with regards to new treatments, new gene mutations etc, so the outlook for people with MPNs is very good.

I know it is hard for you both, especially as you are new parents, but try not to worry too much, once your wife has been given her diagnosis you will be able to move forward and start coming to terms with the diagnosis, which can take a while, but you will get there.

Take care, Maz

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Both feeling a little better about it all now thank you Maz. I think the reason for the intense panic was due to lack of correct information and thinking I was going to lose her within a few years.

Still feel a little in the dark as not got to see anyone yet and not even an appointment date, but it has gotten better in the last couple of days, been able to eat and sleep again.

I think it's just a matter of seeing the bad words and immediately thinking and fearing the worst and it took a little while for what everyone was echoing here to actually sink in, plenty of life left to live.

I'm so grateful to everyone here and regardless of the diagnosis, MPN or not, I will stick around here and talk to anyone who needs to chat or vent. I will also keep everyone updated with our news as it happens.

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