The Patient Perspective-Michael A. Weiss

Beyond Biologics 4 Crohn’s Disease?

Crohn’s Disease & Perspective

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Erythromelalgia – How to Treat it?

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Secondary Erythromelalgia – 1st VISIBLE Environmental Disease?


October 9, 2016

      I’m beginning to think that Secondary Erythromelalgia (EM) is akin to the body’s unregulated and grossly exaggerated “defensive” response to toxins or abnormal systemic conditions or diseases. Technically it manifests as both a neurological and vascular disorder but reversing it or medically treating it to the point where the patient is no longer handicapped by it or even free from its devastating nerve pain is presently not within the capability of traditional medical means. Even diagnosing it in a timely and accurately fashion is extremely difficult. Patients in constant or flare-like intermittent severe EM pain too often must play Medical Detective to “run down leads” in hopes of more clearly identifying their symptoms so they can then search for doctors with even minimal EM experience to correctly diagnose them.  But being “treated” still seems to be a burden the EM patient must bear and with the proliferation of patients sharing self-treatment protocols in different Facebook and Yahoo EM Groups there is actually progress being made in that regard. However, professional medical identification, authentication  and self-treatment oversight is sorely needed, yet for too many, or most, if not all EM patients, it is still elusive in this day and age when applied transcendent medical research has converted what were formerly  life-threatening devastating forms of cancer into manageable life-style altering chronic conditions. 

  Logic would seem to indicate that addressing, treating and hopefully repairing the underlying primary “offensive” toxin, systemic interrupting event or harmful systemic condition would extinguish all “secondary” responses and conditions like EM but that typically or often is not the case with EM because nutrition, genetics and environmental factors conceivably makes each case of EM different such that individualized treatments or individualized modifications of treatments are required despite it’s initial “secondary” etiology.  However, Secondary EM is NOT an “Invisible Disease” […]

Secondary Erythromelalgia diagnosis journey

rh-3 October 5, 2016 – “Secondary” Erythromelalgia or EM makes my hands and fingers so red that they BURN like Frostbite. EM is also referred to as “The Man on Fire Syndrome” because it literally feels as if your hands and fingers are on FIRE. It is extremely RARE and INCURABLE – at least by traditional means. Lovely.

October 7, 2016 – I have not been able to post much lately because from June, 2016 through September, 2016 I was busy trying to be diagnosed and treated for what started out as “pins and needles” in my fingers but quickly turned into increasingly SEVERE Frostbite-type burning pain in my hands, fingers, feet and toes.  I started with a Pain Management Doctor thinking it was the beginning of an orthopedic problem (likely involving my Neck) but also simultaneously consulting with my inimitable longtime gastroenterologist Dr. Mark L. Chapman because he had “successfully” treated my extremely complex case of Crohn’s Disease  ever since I was finally correctly diagnosed in 1984.

      Just like the “Kardashians” are to blame for people becoming seemingly credible career celebrities with no discernible talents other than their licentious proclivities, Crohn’s Disease has been the “sex tape” which launched and fueled my career as a chronic patient and patient advocate. My very complex case of Crohn’s Disease and its many peripheral manifestations often presented mystifying and even life-threatening issues which confounded doctors all over the world except one (1) located on the Upper East Side of Manhattan. Dr. Mark Chapman’s proven track record in solving ALL of these byzantine medical problems since 1984 made him my obvious choice to quarterback what I suspected was going to be a protracted “diagnosis journey” with these extreme symptoms.

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He’ll be right in to see you

"He'll be right in to see you." “He’ll be right in to see you.”

“He’ll be right in to see you.”

      Your doctor appointment is scheduled for 5:30 PM and at 5:25 PM some very nice 30-something “small-business office attractive” receptionist leans into the waiting room calling out your name. For a nanosecond you think you’ve spotted flirtation in her eyes when it’s just the effects of that rare occasion when an attractive woman says your name out loud.  Still, she reminds you of a girl you knew in school so you hold on to this ridiculous fantasy and watch her walk and lead you to your Exam Room.  She walks well and has a great sense of direction.  You arrive at your Exam Room.  She tells you where to place your things, whether or not you need to disrobe and put on the patient gown (which almost falls apart as she hands it you because it is made of f’n crepe paper) and then she leaves you with a smile and an expectation of “immediacy” when she says: “He’ll be right in to see you.”

     You contemplate reading the People Magazine lying on the sterile-looking counter, apparently left over from a previous patient, but you remember her encouraging words as you mentally discard the need to kill time like the other schmucks, some of whom had to wait 90 minutes in this small Exam Room, in which, incidentally, you have convinced yourself no man has ever been subjected to one of those intense, comprehensive prostate examinations where it is always necessary to use a bunch of tissues as soon as the doctor leaves the room so that your ass can once again feel […]

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