MPNforum Magazine

Congratulations MPNforum on your First Anniversary.

“Forum…a public meeting place for open discussion, a medium of public discussion” ..Webster.  Our public meeting place is right here at MPNforum and I am humbled and honored, not to mention pleased and proud to have been accepted and welcomed in my small corner of it.

We have met regularly for a year now and at each gathering an ever larger group has discussed myeloproliferative neoplasm issues in a public medium available to anyone and everyone interested in these merging pathological entities. Our discussions have ranged over a large part of the MPN spectrum from in depth reports of leading edge research to a variety of personal experiences with the disease.

Led by our founder, mentor and fellow MPN patient, Zhenya Senyak aided by an experienced array of patients and caregivers who have something to say and know how to say it, MPNforum has carved out a significant position for supporting and helping to bring to public attention the many and varied aspects and phases of a life with MPN.  With its innovative in-depth magazine format MPNforum has clearly filled a need not met by other internet support groups. It has been or hopes to become a complementary adjunct to every group and any individual concerned with MPN from basic research to individual patients –always inclusive, never exclusive. In the words from a popular older Britcom, “You’ve all done very well”.

I’ve made my point and before I get a frozen shoulder from patting our backs, I better sit down in my corner and resume being the company curmudgeon. Hopefully more often the loyal opposition. Am I egocentric?  Of course. Aren’t we all?  Some show it with reversed humility, others with poorly disguised self-promotion, most of you with simplicity and honest restraint.

In whatever ways we show our egocentricities we are all interested in our own medical problems

…and I plan to use my bully corner to bore you with two problems that many of us have that seem to get short shrift.  At least they are seldom, if ever, mentioned by name on MPN Lists, but must be a common cause of painful symptoms and signs in the lower legs, ankles and feet.  I refer to ‘stasis dermatitis’ and ‘tarsal tunnel syndrome’. Naturally I have both maladies or I would mercifully end my column here. Woe is me!

Stasis Dermatitis is the skin’s response to chronic venous insufficiency in which the venous return doesn’t work right causing dermal signs and symptoms.   The skin over the feet and ankles may be red and warm, itchy, painfully numb (paresthesia) with sharp shooting or dull aching pains and/or exquisitely tender to touch. There may be scattered brownish-red patches owing to engorged arterioles and capillaries and iron stains from ruptured red cells.These patches often coalesce and the skin over the entire lower leg, ankles and feet, sparing the soles, exhibits a mottled dirty-brown pigmentation.  Early on the skin is often thin and translucent then conversely may become roughened and scaly.

One interesting sign with — a sporty name, “Coke Bottle legs” — is seen with the commonly coexistent  ‘Stasis Pannniculitis’ –a thickening and induration of the layer of fat just beneath the skin (panniculus)  –‘beer belly’ in the abdomen, but in the legs a constricting band around mid-leg causes an abrupt tapering of the leg toward the ankle making the leg resemble an inverted Coca Cola bottle. It’s interesting to me because my alma mater is hugely endowed by Coca Cola zillionaires. I wonder if Pepsi is still banned from the campus and if Dr. Pepper is still considered a quack. But I digress.  :)