ET and circulation

[Nixxx]

Hi I have ET and Jak2 and I have been suffering quite badly with pain in my legs the doctor gave me a steroid injection about 6 months ago saying that it could be bursitis but nothing changed after the injection then we went into lockdown. Since then I have had really significant circulation issues. I only have to lean on a table with my arm and it goes numb same situation with my legs. I was wondering if this may be connect with ET I'm sure with your wealth of knowledge that you could advise me. I have not be able to see a doctor even though I have tried always a telephone consultation thats if u can get by the receptionist. Also my gp is not very knowledgeable with MPN's. Thank you

[Minu68]

I have sciatica, a bulge in the soft cushioning between the spinal discs. Mine is in a specific point of my spine, so in certain positions the nerves that lead out from this point of my spine get compressed. This leads to pins and needles /numbness /pain, pick one or more, radiating down the backs of my legs.

This may not be what you have, and you'd have to have a bulge in a couple of places, as each spinal point has nerves leading out to different extremities.

But the numbness you mention is what made me relate.

I hope others come up with other possibilities for you, and hope you get answers. Bursitis could be a cause too, as it is an inflammation issue, not uncommon in our exclusive club.

All the best x

[SoledadBarcelona]

Hi

This is called microcirculation problems. Try a antiinflamatory strict diet, exercise, and Bemer.

It works for me very good. If you find an expert in microbiote, try to balance it.

Regards

[hunter5582]

Most doctors know very little about MPNs because they are so rare. That includes hematologists. It is why is is so important to consult with a MPN Specialist. Not sure what form of pain you are experiencing, but there are interventions for different forms of pain that may help. The circulation issues are also a concern. I also wonder about your level of blood viscosity. What are your current levels of platelets and erythrocytes (red blood cells)? This can also play a role.

Suggest you see a MPN Specialist ASAP. If you do not already have one, here is a list mpnforum.com/list-hem./ .