Contemplating the Next Step in MS Treatment

Merely Me Health Guide
  • Sometimes being a writer means that we travel to places that we don't necessarily wish to go.  I am going to be speaking very candidly in this post about my MS and some of my greatest fears.  I think it will help me to talk out loud about what I am currently going through.  Perhaps you are in a similar place yourself.

     

    This October marked my first anniversary of having this disease.  I have joked that I feel I deserve a cake of some sort with perhaps a decoration on top depicting brain lesions made of icing.  I have a dark sense of humor which helps me to cope with all of this.  If you don't laugh about it, you might cry and I don't have the luxury of boo-hooing over this.  Or maybe more realistically, I don't want to enter that sink hole of emotional despair for fear that I will never get out. 

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    I just got my latest MRI.  The procedure itself went well.  I am an outstanding patient as far as MRI's go.  I can lie as still as a brick.  It used to freak me out to go into the tube and have that mask over my face but now I just close my eyes and just wait until it is all over.  If there is one thing I am good at, it is waiting.

     

    And so I am at the point of doing another type of waiting.  You see my MRI was done a couple of weeks ago and I have not yet called the doctor to schedule an appointment.  My future is on a computer CD, which I made sure to get a copy of, before I left the hospital.  But I am not so sure I want to know what is on there.  There are three choices of what my results could be:

     

    1.  There are no changes.  There are no new lesions.

     

    2.  I am miraculously cured.  Not only do I have no new lesions but my old ones have disappeared!  They write about me in the medical journals.

     

    3.  I have new lesions and I am forced to deal with choosing to do something about it.

     

    I am hesitating to make an appointment for several reasons.  One is the fear of the unknown and of bad news.  Two is that I am not sure what treatments I would accept if I do have new lesions.  And three...I am deciding if I want to go back to my current neurologist or choose another doctor.

     

    This MRI was supposed to have been scheduled months ago and it was not.  Four phone calls were involved to set it up.  My current site for neurological treatment is very lacking in timely care.  Phone calls go unanswered, appointments are not scheduled, and god forbid if I have symptoms where I need to come in.  If there are no cancellations I can be waiting weeks to months to see someone.  It is not a good system.  My neurologist is good but this does not compensate for a highly inefficient overall system of care.  I have my scans on CD's and I am more and more thinking to find another doctor.  But of course this takes time and energy.  And all I want to do is rest. 

     

    There are days when I just want the world to stop so I can get off and meander about the galaxy.  But back to reality here.  I have my brain, my lesions, and choices to deal with. 

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    I am not currently on any of the MS meds.  It was not a choice I made lightly.  I researched.  I debated back and forth.  I weighed the risks and I decided to wait.  I told my doc some months ago that I wanted to wait to see if I would have true episodes and for what the subsequent MRI would reveal.  I know...I know...the first two years they say are critical for this disease.  A lot can go on.  Episodes are not always good predictors of how many lesions you will acquire.  The number of lesions can also be misleading.  Some folk with MS have many lesions but are not as impaired as someone who has a few very well placed lesions which render them motionless.  This is a mean disease in its unpredictability. 

     

    A separate post will be forthcoming about my thoughts on medication. 

     

    So here I am at this crossroad.  It isn't the first time and it will not be the last.  When told you could see into a crystal ball to foretell your future, would you?  Nobody has a crystal ball certainly.  But having this disease enables you to get some glimpses into that murky future.  You see possibilities of what might come to pass. 

     

    At this moment in time, all possibilities co-exist at the same time.  It is only when we view things that some possibilities die and we are left to deal with what is left. 

     

    I will make that phone call.  Soon.  But in the meantime I want to spend some time here in the chasm between hope and reality.

     

Published On: November 11, 2008