ET JAK2 positive : Hello everyone I have always... - MPN Voice

MPN Voice

10,886 members15,201 posts

ET JAK2 positive

YBSx profile image
YBSx
5 Replies

Hello everyone

I have always had a throbbing pain in my hands and lower legs. This gets worse in the evening and after exercise.

The information I received when I was diagnosed described these as symptoms of the ET. I have discussed these affects with my haematologist who doesn’t acknowledge these affects as being part of the ET.

Do anything of you suffer with these symptoms

Thanks Yvonne

Written by
YBSx profile image
YBSx
To view profiles and participate in discussions please or .
5 Replies
dancingfiend profile image
dancingfiend

Throbbing pain is mostly in the big toes ... most noticeable after 'stopping' in the evening and on waking in the morning. I am afraid I think it is the ET, as I was experiencing before diagnosis. Use stretching to combat. Hospital haematologists are very good at reading blood results but don't necessarily know what symptoms we ought to expect.

hunter5582 profile image
hunter5582

The throbbing burning pain in extremities (particularly toes/feet) is a classic MPN symptom. Common in PV and found in ET too. Note that this is a microvascular symptom that can be managed. It may present as erythromelalgia or something more subtle but still bothersome. The most common and often effective treatment is aspirin. Some people need more than one low-dose aspirin

On the other hand, some people with MPNs do experience paresthesia. This is a different kind of pain with a different cause (nerves rather than microvascular). This often feels like pins & needles pain. Treatment is different than with the microvascular pain. Treatment for paresthesia depends on the cause.

Unfortunately many hematologists are unfamiliar with MPNs and how thy manifest. That is why it is so important to consult with a MPN Specialist. Here is a list.

mpnforum.com/list-hem./

YBSx profile image
YBSx in reply tohunter5582

Thanks for your responses. It confirms I’m not a hypochondriac as I am made to feel like at times. MPN specialist would be wonderful but NHS doesn’t seem to take this illness seriously enough to refer us to the correct consultants.

Y 🤔

hunter5582 profile image
hunter5582 in reply toYBSx

It is up to you to ensure you get referred to the right specialist. This can be done in the NHS or most any other healthcare system. Assertive patients receive higher quality care. Passive patients do not. We have to be our own best advocates.

What some in the NHS do is to contact a MPN Specialist directly and get an agreement to be seen, Then they circle back to the GP to get the referral. Others choose one of the MPN Specialist with a private practice nd pay out of pocket. However you do it, it is worth doing.

mfh7 profile image
mfh7

I have the same symptom. I find ibuprofen works much better than aspirin. Usually feel it in my toes and calves but sometimes fingers. I thought it might be caused by low iron or high platelets. Not sure if it is vascular or nerves. It’s one of the reasons I want to try Besremi rather than phlebotomy. It flares up more after exercise with me but often comes on in the afternoon with explanation.

Not what you're looking for?

You may also like...

ET JAK2 Positive

Hello I am new here. Recently Diagnosed with ET JAK2 after months persistent headaches which were...
Afya23 profile image

ET & Jak2 positive

Hi Hopefully someone can help. I've recently been diagnosed with ET and Jak2 positive and have...

ET , Jak2 positive.

Having being diagnosed with ET last August, I have been on aspirin only until my haematologist said...
Rebus12 profile image

ET Jak2 positive issue with red blood cells

Hello everyone I am looking for some advice I am experiencing some unpleasant affects and not...
YBSx profile image

ET JAK2 positive

Hello all, This is my first post although I joined the forum about two years ago. Not sure why I...
pjm03 profile image

Moderation team

Debinha profile image
DebinhaAdministrator
Mazcd profile image
MazcdPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.