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Timothy L. Vollmer, MD
Department of Neurology
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Co-Director of the RMMSC at Anschutz Medical Center

Medical Director-Rocky Mountain MS Center
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Department of Neurology
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There’s Value in Being an Expert Patient

It’s not often that I think of myself as an MS “patient.”

Like many of you, I try to think of myself as a person living with multiple sclerosis. I’m not afflicted by it, I’m not an “MSer” (though I do understand why many identify with this moniker), and please don’t ever call me an MS sufferer.

Not to be politically correct about it, but I’m only an MS patient when I’m in the direct care of my medical team.

Yesterday, I was in to see my general practitioner (GP) about a health issue almost completely unrelated to my multiple sclerosis. Our discussion about my general health turned to MS and his ability to help with one of my potential MS decisions.

He asked some questions about my MS, and then the discussion turned a bit more general about the disease.

He brought up some topics about which he was peripherally aware, such as vitamin D, diet theories, the price of MS drugs (and prescriptions on the whole in the United States), and the relatively high prevalence of MS in our specific area: Though we are a small town of fewer than 2,000 people, we could rattle off nine people we know who have MS — most of them not originally from the town.

When the Patient Educates the Doctor

The chat soon went from a doctor-to-patient to a patient-to-doctor chat.

Now, it must be said that while my doc is well-educated, running a respected practice, and nothing like a Patrick Taylor character, he is still a country GP in rural Ireland. He is also one who is willing to do extra research into a topic for the sake of his patients.

My ability to speak from a researched perspective, to paraphrase from recent research papers, and to answer his questions in medical language led my doc to refer to me, with a smile, as an “expert patient.” His tone and the direction in which the conversation continued confirmed that he meant the title as a compliment and not to say that I was some kind of MS know-it-all.

The More You Know, the More You’ll Get

I believe that we are all relative experts on our own condition and the way MS is affecting our own bodies. I also think that it’s important that we educate ourselves on at least the basic facts of the pathology of multiple sclerosis.

I have noted an immediately perceivable change in professional attitude when I speak of “hormone-like vitamin D3” rather than just “vitamin D,” use medical terms like oligodendrocytes (the myelinating cells of the central nervous system), or properly pronounce progressive multifocal leukoencephalopathy (PML).

It’s not that all of us need to be experts in all aspects of this disease; we have doctors and researchers for that. What I do believe we should do is educate ourselves to the fullest to:
  • Ask informed questions of our doctors.
  • Be able to hold a conversation that allows those professionals to give us more than the Reader’s Digest version of an answer.
If we show that we have done our homework, I have found that we are treated differently, thought of differently, and spoken to differently.

Story Source: The above story is based on materials provided by EVERYDAYHEALTH
Note: Materials may be edited for content and length


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