Trust Between Doctor and Patient is Vital: MS, Steroids, and Vacation

  • The importance of having a good relationship with your health care providers cannot be emphasized enough.  This truth was reinforced through a recent interaction I had with my neurologist’s office before I left on vacation a couple of weeks ago. 

    The experience causes me to ask - If you call your neurologist’s office with a request that seems a bit unusual, what kind of response do you expect?

    During the past month, I have been traveling.  First it was a few days downtown in Washington, DC.  Then two short trips to Chicago and New York City.  Followed by last minute travel to Oklahoma to attend a family funeral (and spend a couple of days with the fabulous nephews).  And finally, a really BIG trip to Washington State, Alaska, and Canada. 

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    As mentioned in a previous post, my MS was threatening to get a little noisy a couple of weeks ago.  Symptoms were beginning to boil, just under the surface, and I was waiting to see which way the wind would blow.  Would the symptoms bloom into an official flare?  Or would symptoms lessen to a simmer and fade with a whimper?

    Seems like a lot of self-evaluation keeping on top of this MS business (don’t you think?), complete with whimsically mixed metaphors.

    Sandwiched between New York and Oklahoma, my symptoms were beginning to become a bit stronger.  Of course, I didn’t want to think about it, much less talk about it, especially since it was a Friday afternoon on which the decision was made to fly to Oklahoma the following Sunday morning.  There wasn’t much time to think about anything.

    I tried not to think about my MS, except that I did come “this close” to calling my neurologist’s office to ask for a single dose of IV steroids during that interim Saturday.  I kept thinking about how the pulse steroids I took in the fall kept my MS and RA symptoms rather quiet.  How I wished that they were being quiet right then.

    Well….I didn’t call the doctor’s office before the Oklahoma trip, but I did call during the one and only day I was home between Oklahoma and Seattle.  Things were still going on and I was afraid to admit that a minor flare was occurring.  Of course, it’s not the minor flares which are problems.  It’s the waking up not being able to walk or see which were fears in my mind.

    When I first called the office, I got through to an employee who told me that Nurse A (the dedicated MS nurse) was at lunch.  I needed to leave a detailed message of why I needed to speak to her and a number at which I could be reached. OK, fair enough.

    I am lucky in that I have a dedicated MS nurse at my neuro’s office.  It was a Nurse Carol who helped me out so much when I was new to MS.  She was there to answer questions and to schedule last-minute appointments when a relapse was suspected.  Nurse Carol retired last year and Nurse A took her place.

    Fortunately, Nurse A did call me back before the end of the work day.  I had a simple request.  I wanted to have a prescription for Decadron (an oral steroid) in the event that my MS flared while I was on vacation (and on a cruise ship).  I wanted to be prepared just in case.

  • Since I haven’t needed to contact Nurse A for any reason, she doesn’t know me well.  Shortly into our conversation, Nurse A started explaining that they don’t prescribe steroids for every little thing.  (I know that).  But she did want to know what was going on (in between more mentions of “minor” relapses and my nurse practitioner not being one to write a prescription without seeing someone in person). 

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    When I suggested that I was in denial about my current minor relapse, her tone of voice changed.  She asked for details on symptoms.  I was able to tell her how the current ones have been precursors to more significant relapses in the past.  She said she would speak with my nurse practitioner (who knows me very well). 

    Before the end of the day, I received a phone call letting me know that my nurse practitioner had indeed written the requested prescription.  It would be waiting for me at the local pharmacy.  “Thank you so much,” I said.  Nurse A also asked that I call them when I returned home if there was anything I needed.

    Turns out that I didn’t use the steroids while on vacation.  My MS body behaved itself rather well.  There were even a couple of days where I walked more than two miles.  The body was cooperative and I used the cane for extra support while “hiking.”  That cane came in very handy indeed.

    Now that I’m home, I’ve got to admit that the fatigue has set in big time.  I’m really tired.  My face is fuzzy, a symptom which usually precedes a relapse or indicates that I’m completely worn down.  I still have that bottle of steroids but am saving it for an emergency situation. 

    Without a trusting relationship with my nurse practitioner, I would not have received the prescription.  No way.  She knows me well enough now to know that I do not make inappropriate requests.  She knows that I do not complain of relapses/symptoms until they are undeniable.  I’m sure that she recognized that I was simply planning ahead, because we all know that the cruise doctor wouldn’t have had a clue what to do with me if I woke up blind one morning.

    Trust goes both ways.  You need to trust your doctors and nurse practitioners.  They need to trust you too.  Get to know the members of your healthcare team.  Let them get to know you.  Develop that working relationship because you never know when you’ll make a phone call and need to be taken at your word without time to come in for an evaluation.


    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.


Published On: July 12, 2011