Hi, recently diagnosed with ET, to say I was shocked is an understatement, as platelets elevated slightly 460 & JAK2 positive results was a surprise to everyone, only med is low dose aspirin.
Was wondering if anyone had notice the following symptoms of sometimes difficult in swallowing & breathlessness, apart from the usual stingy sensation in fingers & random stabbing/numb sensation in arms.
many thanks for reading & apologies for sounding like a moaning Minnie 😋
Hi,
There are many symptoms with ET & it seems to vary from person to person.
I haven’t experienced your symptoms to speak of but that’s not to say that they could be linked.
My main symptoms are tinnitus & tiredness.
I’m sure others may be able to expand on your experiences.
In the meantime try not to worry. We’re all here for one another so please let us all know if you have any worries & we’ll try to help.
We’re all in this together here.
Hello and welcome. Glad you found your way here. this is a great place to find support and information.
Fatigue is the most common MPN symptom. The sensations in your fingers and arms is also a potential MPN symptom. Treating it requires sorting out the difference between microvascular and neurological symptoms (e.g., erythromelalgia, paresthesia, etc.)
Note that many doctors are not familiar with how MPNs can manifest. It is important to consult with a MPN Specialist rather than a general hematologist. Here is a list.
I was diagnosed with ET over 30 years ago. It progressed to PV about 10 years ago. I have lived a good life and at age 68 continued to do so. Managing a MPN properly makes a huge difference.
Wishing you all the best on this journey.
Hi Nicky,
Welcome to the site. We all seem to have different side effects. You get lots of information from this site.
I am 79 and my doctor was watching my slowly rising platelets until it reached 621. I was diagnosed in June 2022 with Et JAK2. I am taking low dose Hydroxyurea and was already on a blood thinner for AFib. My main issues are headaches, tinnitus, and leg aches at times.
Best wishes, Eileen
Thank you everyone for those replies, it means a lot & so reassuring ❤️
Welcome Nicky & don't worry about having a moan here - we understand! As others have mentioned there are a plethora of possible symptoms from MPN's as our blood can impact on many aspects of our bodily functions. Most important is being able to advocate for your own medical care and having a health care team around you that you can trust and work with - that will take the time to explain but also listen to you and coordinate with the specialist. It can be tricky to figure out what is related and what's not but I do figure that all the body is connected - you will become an expert in your own body! I have a great GP who does the day to day fire fighting (antibiotics for infections, HRT, referrals for frozen shoulder etc), Haemotologist for regular check ins, Specialist Nurse to contact for any random questions or concerns, and finally Specialist MPN Consultant for MPN medical strategy.
Hi
I was diagnosed when I was 38 I felt absolutely dreadful for years and thought it was exhaustion with having children, itching headaches and heavy legs etc .. I am now 52 and still on asprin my platelets were 900 now 500 since I developed less stress and eat well.
Look into the Mediterranean diet cut out as much sugar as you can and white carbs it’s like an instant lift. Try and exercise and walk 5000 steps or more a day and keep pushing through. I itch and ache all the time it’s part of our journey just accept it and embrace it don’t fight it, try and help symptoms with good diets and join ET Facebook sites it’s been a revelation for me x good luck don’t worry you will be fine, keep positive and take every day as a new day and power through x
Hi SammieLou,
I have PV Jak2+. I have been using the BA - beta alanine powder for my itching with wonderful results. I purchased a tub from a gym supplement store in my small town. I travelled to Eastern Canada this summer for 3 weeks and added it to my water bottle throughout the day. It dissolves very well, no taste, no sugars, no flavours. I used 1/4 of the spoon they give in each water bottle refill and just kept filling, adding and drinking throughout my day, my holiday. I purchased it in august and will need a new tub soon and it is beginning of October. Truly amazing stuff - I was a super itcher BUT not anymore. Thought I share my great results, hopefully it will help you also.
Hi NickyRobinson
Welcome to our small but strong and supportive family around the world.
No questions are too big or small.
I was diagnosed with ET Jak2+ but only a few months later it was definitely more PV.
I found an MPN specialist- lucky to say she is who I have all my appointments with. - Look for a MPN Specialist in your area —That was the best advice given.
My now 22 yr old daughter was diagnosed with ET shortly after I was. Surprise it can show up in your family! ( I come from a very large family and so far just in my personal family blood.) Happy for the diagnosis though. Doctors at diagnosis said “ your body has a secret it can make blood clots, and now we know too”.
Truly knowledge is power. Use your diagnosis to adjust your lifestyle and thrive.🌸🌺🌼
Thank you ❤️
thank goodness for these forums
Newly diagnosed with myelofibrosis
Newly diagnosed with PV
Needing reassurance - newly diagnosed 
Newly diagnosed with PV 
