Mayo Clinic wants to hear from you

The Mayo Clinic is doing a survey of MPN patients and their symptom burdens. Specifically, they're looking at alternative treatments and how patients use them.

This is an international study, so please consider taking the survey here.

Be well!

EM and the weekly poll report

EM is rare, but ET can be a cause. It starts with
a burning sensation in hands, feet, ears, or face,
and can spread. 

File this info in your "something to keep an eye out for" folder: Erythromelalgia, EM for short. It's a rare condition that can be caused by ET.

A friend sent me an article from the Washington Post last week about a woman in Maryland who had a mysterious foot problem:

Along with the sensation that her feet felt unusually warm, the skin on the second toe of her right foot looked inflamed. Weeks later, she noticed a small blister. ... Changing footwear didn’t help. Sometimes her toe would itch and feel tingly. At other times, the redness seemed to lessen, but it never disappeared entirely.

New feature! The weekly ET poll

This blog and Facebook page are doing well enough to try a new feature: The weekly poll.

At top right each week you'll see a new question. You can answer and see the poll results in progress. This week's question: What do you worry about MOST as an ET patient?

The poll closes in a week, and I'll update this entry with the final results. Then a new question will be posted. 

If you have ideas for future questions and answers, please suggest them in the comments box or over on our Facebook page.

Be well!

Does your doctor CARE?

Doc lacks empathy? Try asking different questions!

Interesting article in the Washington Post today that shows patients may actually get better quicker if they have doctors who rate high on the CARE scale. ET patients have a chronic illness that doesn't get "cured," but how might understanding the scale improve communication with your doctor?

Let's take a closer look.

The CARE scale asks patients to rate their doctors from 0 to 5 (5 being best) on these 10 questions:

Ischemic digits and circulation exercises

Squeeze the foam ball for one second ...

... and release for one second, spreading
your fingers

I recently wrote about stroke risks for ET patients, but there is another risk you might want to be aware of, and that's ischemia in the hands and feet.

Ischemia is restricted blood flow, often caused by small clots in the hands and feet or further up the "line" in an artery or vein.

I don't have hard numbers of the incidence of ischemia in the hands and feet, fingers and toes of ET patients, but it seems to crop up fairly often in the medical literature. So pay attention to the circulation in your hands and feet.

Some tips: