Another brief interlude from the present…An hour late but good news

Today I had my first appointment with my new neurologist.  We were 20 minutes early for the appointment, but weren’t seen until an hour after our appointment time.  I am actually not complaining.  I think I would willingly wait  2+ hours to be seen at this facility.  Admittedly, I would find it easier if I had a good book as a diversion, but I forgot to bring one today.  However, even if I had remembered a book, I was so nervous that I don’t think I would have been able to read a page of it.

I am lucky enough to live in an area that has an abundance of excellent hospitals, including Johns Hopkins.  For MS, they are viewed as one of the best in the country, as is evidenced by the number of people who traveled from other states just to be treated there.    When we arrived at the neurology floor,we became aware of one downside:  they are now charging a “facility fee” of $73 per appointment, since the building is now classified as an outpatient building.  Luckily, if there are no relapses, we should only have one appointment a year.  However it is now cheaper to go to the ER than to go to a doctor’s appointment…not good news for the local EMS crews out there!

The doctor himself came out to greet us and bring us back to the examining room.  He had taken the time to get to know my history prior to this appointment, though he did go back over everything with me.    This doctor was taking over my case from the previous neurologist who had left the facility.  Since I was not considered a “new” patient, he said that we were only allotted 30 minutes for the appointment, but he was sure we would take longer than that since this was our first meeting.  This comment impressed me very much, as did several other things:  He listened respectfully to everything I had to say; he answered every question without talking down to me; he did not look down on me when I told him what it now takes me to get to sleep (which I know is unhealthy); he was supportive when I broke down when discussing how I felt I had lost a lot of who I was in the last two years; and he decided to test me for several possible complicating factors before throwing more drugs at me.  These in and of themselves would have made for a good appointment, but the best part was that he said he saw nothing in my file or my current examination which made him feel that my my subtype had changed from relapsing/remitting to secondary progressive.  That was what I had been really scared about when approaching this appointment.  The only thing that gives me any concern is the fact that I do not have a way to reach him at any time like I did my last doctor, and that ability proved extremely helpful on more than one occasion.  I am also thinking about looking for a more holistic neurologist to talk about diet and lifestyle changes that have proven helpful with other MS patients.  Johns Hopkins is the best, but they are all about medicine.  Many people have had success with more holistic treatments, so I’d like to give that a try too.

One of the other nice things about Johns Hopkins is that you can get everything done in one place.  We said goodbye to the neurologist, sat in the waiting room for about ten minutes, and then had the eye test done.  We went back to the waiting room for another ten minutes and then I was called to get my blood drawn.  The only thing we didn’t accomplish today,besides eating lunch at a reasonable hour,  was an MRI.  We were told that they never schedule them on the same day.   I go back in three weeks for that.

I’d like to thank all of you who wished me luck today and were keeping me in your thoughts.  Also, an extra special thank you to my friend Kim who watched our babies for us today!

To end this post, I must once again express my unending gratitude for the generosity and support being shown to me and my family as we continue to fundraise and recruit walkers for team Next Steps.  We have been more than overwhelmed by those that have reached out to us and continue to do so daily.  THANK YOU ALL!!!!

Next post it’s once again, back to the past.



  1. herrad said,

    February 18, 2010 at 10:36 am

    Hi Debbie,
    Great to read your appointment went well, the neuro sounded good.
    Like a doctor who reads your filr before you get there and who does not wantt o push drugs but look and listen first.
    He sounds like a real docto not an adjunct of a druf company as so many are I think
    Have a good thursday.

  2. herrad said,

    February 18, 2010 at 3:21 pm

    Hi Debbie,
    Please come over to my blog log and pick up your red bow award

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