Hives and rash
Kimmykan hour ago
Hello, I wanted to see if anyone that has polycythemia vera had problems with hives and actual rash. I have little pimples something forming...
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Hillyk15 hours ago
Hi, my 24 year old daughter has been recently diagnosed with E.T. She is reluctant to join herself, feels very isolated, that there is no-on...
Living with MPNs conference: A fantastic event!
Susana717 hours ago
I want to add my heartfelt thanks to MPN Voice for organising the fantastic Living with MPNs event at the BMA on Saturday 18th Nov. Everythi...
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Demystifying Targeted Cancer Treatments
Ovingitea day ago
Anyone who found Dr. Adam Mead's presentation at the Living With MPNs Day as fascinating as I did, might be interested in a free online cour...
7 Replies7 Likes
What a great London forum
Poppy6060a day ago
What a great day the London forum was I learned such a lot by such great consultants .lt was lovely to meet so many lovely people and say he...
10 Replies3 Likes
Living with MPN
EleanorPVa day ago
Thanks to everyone who congratulated me on my patient talk. I was overwhelmed with the response from the audience. This was the first public...
10 Replies7 Likes
So sorry I missed forum
Superwomana day ago
I am so sorry that I had to miss the London Forum, but it has been a very busy weekend, with my Grandaughter Wren’s christening today and ha...
1 Reply1 Like
Wow! What an event!
Ovingite2 days ago
Yesterday's Living with MPNs event was a fantastic day that easily surpassed my expectations. Top class expert speakers, heartwarming patien...
2 Replies6 Likes
Essentially Thrombocythemia (Exon 10)
RafflesUK2 days ago
I was wondering if anyone else has an Exon 10 mutation as it seems very rare. It’s similar in characteristics as JAK2, I was diagnosed with ...
MPN DAy IN LONDON
Garden9872 days ago
Hi everyone. As usual am being a total geek with this machine, Have posted several replies but they don't appear to have gone through. Jus...
PV in dogs
shiftzz2 days ago
By David Kerr, DVM. Edited by Robin Downing, DVM, CVPP, DAAPM.
What is p...
2 Replies2 Likes
JSKly3 days ago
Thank you to all responsible for allowing us to sit in on the MPN seminar by the web. What an impressive line up of international clinician...
4 Replies4 Likes
Skye3333 days ago
Good morning everyone. Is anyone on watching the recording of the MPN day in London. I cannot get on it as the link is telling me it hasn’t ...
Questions to ask at my first appt.
Spectabilis3 days ago
I am 38 and was recently diagnosed with JAK2+ and Primary Myelofibrosis. I have my first appointment with a Dr at UCSF. What are the ...
Too Iron Deficient?
lizk19933 days agoPOPULAR
Hi guys, just wandering if anyone could tell me anything about their experience with this. At last count (July) my ferritin was 16.1, but h...
24 Replies1 Like
wotan103 days ago
Can anyone help with another concern re ET. I know in regards to treatment it is left up to our Haematologist and his advice. We were due t...
dgk703 days ago
I was just wandering if anyone else on this forum has ET and Crohn’s disease,
MPNs and Wine
Paul1234563 days ago
Has anyone had any problems with Wine, having to restrict intake? Obviously not an ideal supplement to HU or Interferon and all depends on l...
Hello from a newbie with E.T.
Mica114 days agoPOPULAR
I am a 60 year old lady who was diagnosed 3 weeks ago with E.T. after 12-18 months of, as I thought, weird, periodic and unrelated symptoms....
36 Replies3 Likes
shiftzz4 days ago
Saw this some time ago, helps to explain PV...
Blood tracking Excel
I have made available a version of my spreadsheet,see below. Its a start that fellow members can use to track their blood results.. Its not...
14 Replies9 Likes
Friend or not a friend??
Superwoman4 days agoPOPULAR
I was out with a friend this week, she is a bit or rather a complete health freak!!! Which I except, but she started spouting on ab...
24 Replies3 Likes
Von Willebrand and MPN
Paul1234565 days ago
Does anyone else have this condition as well as ET/PV?
Wondering if it increases haemorrhage risk but decreases stroke risk.
Surreygirl745 days ago
Hey everyone! This may be a strange question but has anyone with an MPN (I have PV) had or have an issue with receding gums, now I know the ...
6th monthly blood test
Lindiloo35 days ago
Hi all fellow ET followers
I have just received my blood results. I was very happy to see my platelets have come down slightly to 620 from 66...
5 Replies2 Likes
Consultation /GP Notes
shiftzz5 days agoPOPULAR
In Leicestershire,after every consultation, the note sent to your GP are also sent to the patient...In their views all notes should be trans...
Blood Tracking 2
shiftzz7 days agoPOPULAR
Picture of the book supplied by Leicestershire NHS to record your blood results etc.. A really good idea...
22 Replies6 Likes
Cramps and Vibro Plate
Paul1234567 days ago
Does anyone else use one of these as a massage aid. Really flows the blood through the legs and relaxes muscles before bed. Someone posted t...
shiftzz7 days ago
I may be OTT, but, I keep records on my results. Anyone else do the same?
12 Replies4 Likes
Leg and/or bone pain
jane138 days ago
Hi I posted before about this when I had PV, now have MF and got the problem back again. Several posts about this but it's got so bad though...
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