Newly diagnosed

[Brendaf]

Hi I am new to this, I have been diagnosed with myeloproliferative disorder but as yet is unclassified. I have been started on Asprin and await further feedback from Professor Harrison. Any further information would be appreciated a bit unsettling for me at the moment. I do seem to have the same symptoms as most i.e tiredness, dizziness aching joints and headaches and memory problems.

[Aime]

Hi Brenda, welcome to this forum. You have come to the right place to get trustworthy information, support and empathy from people who do really understand what you are going through. Maz, our editor, and her team closely monitor this forum to ensure all advice and information is correct and helpful. It is also worth going onto the MPN Voice website which gives you loads of info for you and your family.

When first diagnosed I felt confused, anxious, even angry but it is only natural. Comfort should be taken from the fact that a lot of people on this forum have had their illness for many years and are still here.

Drink plenty fluids, eat healthy (plus treats - we all need them) and exercise as your body allows and rest if you have too. You will be well taken care of by Professor Harrison and her team.

I'm sure you will get more replies shortly from all the lovely people on this forum. Keep in touch, don't be scared to ask questions - you know now you're not alone. Kindest regards Aime xx😺😺

[Superwoman]

Hi Brenda, welcome to our forum, you could not of found a better place. When I was first told that I had ET I was very afraid especially when I had to go on the Drug Hydroxycarbamide I was already on Asprin, I thought my life was over, but my Haematology nurse gave me lots of information which Included MPN Voice, so got in touch with Maz our editor and have never looked back.

You are very fortunate to be able to see Professor Claire Harrison and in very safe hands. I attend my Hospital in Orpington, every four months and I must admit mine are very good too,, but the Professor is such an expert in her field, so very lucky in deed.

Life has not changed much for me, I eat well, eat plenty of fruit and veg, drink 2ltrs of water a day, and keep fit. I still enjoy the occasional glass of wine, and have learnt to live with my ET and not let it rule my life, and for me this has worked. I still get the odd day when I feel really exhausted but as for the othe symptoms that I had before my diagnoses are few and far between now.

So welcome Brenda, you are not alone, we are a very rare breed indeed.

Jean

[Ebot]

Hi Brenda

Being newly diagnosed IS a very unsettling time. We’ve all been there. You can take comfort in that you are in very capable hands at Guy’s. The two lovely Clinical Specialist Nurses Clare and Yvonne are an invaluable resource if you have a question or need a chat between visits. Initially my BMB results came back as ‘unclassified’ but the Prof decided that they most reflected a diagnosis of ET and treated me accordingly. About four years down the line as my blood results began to change a further BMB and nuclear scan confirmed PV and the treatment changed from just aspirin to aspirin and venesections. As others have said this is a very welcoming forum and MPN Voice a wonderful resource. Good luck!

[Brendaf]

Thank you. I am currently under a specialist in Liverpool who is requesting further information from Guys I'm not actually under Professor Harrison but hopefully she may be able to offer more information. Thanks again to the replies it's nice to know others in the same or similar position. x

[Mazcd Partner MPNVoice]

Hi Brenda, welcome to our forum, I can't add anything to the advice you have been given above. So will just say let us know when you have a more definitive answer as to what MPN you have. Best wishes, Maz

[fannetastic]

Welcome Brenda. If it helps, I have been diagnosed as unclassified since 2011. They cant pinpoint which category I am in despite having 4 bone marrow biopsies . They seem to think because my Hematocrit levels keep rising that it is heading towards PV and have me on Venesections and Clopidogrel, but no definite diagnosis as yet.

My worst part on diagnosis was the feeling of being so alone. Although I had family and friends around, it wasn't the same. Then I was directed to this site and found my MPN family that knew exactly how I was feeling at any given time. One important thing I found out is that I wasn't going to expire anytime soon and this dreadful thing we all have is, in most part manageable

Never be afraid to ask on here, also don't be afraid to vent any feeling's, we have all been there and understand fully when we are down, frustrated, anxious and just generally out of sorts.

Best wishes and keep your chin up as they say.

Anne

[Brendaf]

Thank you Anne, I thought I was probably the only one unclassified it's good to know that I'm not on my own. I have been having these problems for quite some time but thought it was just me being lazy. A few years ago my white blood cells were raised but I was told this was normal for some people. Since then they have been rising so then had a bone biopsy that's when it was found I had an MPN? But more tests have shown it is not one of the main ones so is unclassified. I am just on Asprin until further information from Guys hospital. So until then I am all over the place but feel much better knowing there are more like me. x

[Cecilie]

Hi Brenda, I am unclassified too! It is good to know I'm not the only one, I felt quite confused by the result of the BMB. Because it showed some scarring they cannot confirm the diagnosis of ET, although they are treating it as ET. I guess I am somewhere between the three different MPNs. Anyway, this forum is full of lovely people and excellent advice, which has been so useful since I found out about my MPN.

Best wishes, Cecilie

[Brendaf]

Thank you Cecile I'll let the group know when I find any other info on this x

[jimb7174]

Good luck Brendaf like you I have been recently diagnosed with MPN (MPD) and am still waiting to find out which one. Just wanted to wish you all the best and to say appears to be quite a few of us in a similar situation. Hope your doing ok.