MS and Your Quality of Medical Care

Cathy Health Guide

    Recently I began experiencing all the symptoms of a full-blown exacerbation.  Tingling, numbness, fatigue, and weakness- you know the drill.   The symptoms were escalating with each passing day.  It’s been awhile since I’ve needed to even think about using the dreaded medication prednisone (corticosteroids) - the usual cocktail of choice offered to help speed up any MS recovery.  Over the last 25 years I’ve taken them orally and intravenously, and each time the side effects have been severe. 


    A few months before this exacerbation, I was unhappy with my current neurologist.  He always seemed distracted during my examination, never completely listening to me, never making eye contact with me.  He would usher me out of his office before I was finished telling him what my current issues were. After researching and asking for a few recommendations, I decided to change to a different doctor that might be a better fit for me.  I called the new office a few months in advance to make an appointment for my annual physical.  Now, fast forward to my current exacerbation. I called this new office to get an immediate appointment with the new doctor (or one of his partners).  The receptionist told me there were no openings, but to keep calling back!  I called later that same day to speak to a nurse practitioner.  She was very terse, took my name and number, and told me she’d call me back.  She never called me.  I called a third, fourth and fifth time, each time re-telling the receptionist about my situation and, again, I was told they’d call me back.  No one did. 

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    Two weeks passed while I kept trying to make an appointment.  My exacerbation was worsening, spreading around my body.  I finally – finally - decided to find another doctor.  For once, luck was on my side.  I found a neurologist I had used many years ago who I had lost touch with due to life and logistics.  I was thrilled.  I called her and she gave me an appointment immediately. 


    I won’t go into the rest of my story right now because I want to get to the Question of the Week.  Here it is:  When your MS starts acting up more than usual, how long do you wait until you call your doctor?  How responsive are they in scheduling an appointment for you?  When you speak to your doctor, does he listen to your needs?  Do you feel you are a part of your team? 


    For many years, I received top quality MS care, the gold standard of a medical team.  They were responsive, compassionate, well respected and on the cutting edge of research.  They treated the whole patient.  I felt as if they were my family. This feeling of patient-centered care is what I was used to for so long that it was a shock for me to experience anything else.  I hope you will share your story – good, bad or otherwise – because I’d love to hear it.

Published On: January 09, 2012