ET JAK2 positive

[YBSx]

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

[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]

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 in reply to hunter5582]

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 in reply to YBSx]

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]

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.