Treated, but what if???

I was finally being treated!  I can not even begin to describe to you both the relief and the fear I felt.  The relief was that that something was being done that might actually halt my decline, if not help me regain some mobility.  The fear was that we had waited too long and I had gotten so sick that I would not be able to recover fully from this episode, like I had from all the previous relapses.  Where would I eventually end up?

At this point, I was incredibly mad at my neurologist and his nurse.  They are part of one of the best MS programs in the country, and are associated with an entire hospital of specialists in other fields of medicine.   So why did it take so many strokes of luck to get me treated?  It should have taken just one simple phone call from my neurologist to a high-risk OB specialist in the same hospital to ask about my case.  If I had not gone to see my high-risk OB so early, and had not followed up on her offhand comment , how much longer would this have continued?  To this day, nearly 2 years later, whenever I think about it I can almost feel my muscles tensing and my blood pressure rising.  Talk about someone dropping the ball.

With the first round of Sulomedrol I began to feel a little more strength in my legs almost immediately.  However, the numbness in my right arm actually got worse.  It felt like something was encircling it and squeezing beyond what was possible.  I relayed both the good and the bad to my neurologist, and he had no explanation for the arm issue.  He did make sure that I got an appointment with him in about a week.

Unfortunately, several days before the appointment, I started to get some tingling and altered sensation in my left hand.  I told Ed that I wanted to go to the ER.  My left arm was the only extremity I could still completely use, and I was petrified that I would lose use of it by the time my appointment came around.  We asked my Mom to babysit and went to Johns Hopkins ER at 4am Saturday, hoping to avoid a long wait.   However, it took over 6 hours, in a slow ER, before we were seen!  This was mostly due to the incompetence of the admitting personnel.

Once back in the treatment area, they did the normal blood draw, blood pressure, etc.  Then we just waited for the on-call neurologist to come see us.   It turns out that she showed up in the ER just as I was exiting the restroom and slowly limping along with Ed supporting me.  She said she knew immediately whom she had been called to see.

After her examination, she said that she wanted to admit me.  She didn’t want to admit me for the MS, but because she was having an incredibly hard time believing that this was all caused by the MS and wanted to rule out some possible trauma causes.  Her disbelief came from the fact that women are supposed to be protected from MS during pregnancy.  Most women with MS feel the best they’ve ever felt while they are pregnant.  I also hadn’t had any problems with my first pregnancy.  In fact, I worked on a paramedic unit until I was 33 weeks pregnant.

After several tests, everything that could be ruled out as a possible cause was in fact ruled out.  The only remaining conclusion that the many doctors could come to was that the cause had to be the MS.  Even while saying this, they were still scratching their heads.  I was prescribed a five day course of high dose Solumedrol, which caused the same increased issues with my right arm again.  All they could say was, “Well it’s NOT supposed to do that”.  There was no more discussion of that issue.

I was told I could go home after two days, but I asked to stay for a third.  I was scared to go home.  People were paying attention to me, listening to me, and treating me here.  If I went home, I was afraid that I would be abandoned again.  I did go home after 3 days, and saw my neurologist about 2 months later for a follow up appointment.  By that time I had had significant recovery.  In between, I had one more 3 day course of high dose Solumedrol because I could feel my walking getting worse again instead of continuing to improve.  He said that I was improved enough that he saw no reason to see me again until either (1) I had another relapse or (2) a year had passed and it was time for my annual check-up.  He could not, however, tell me what percentage of recovery I would actually obtain.  It was a wait-and-see game.  I will always wonder if they hadn’t waited so long to treat me if this would have even been an issue.

I had now been off work for 6 months, had used up most of my leave, and had no guarantee of what my future would hold.  After numerous discussions with the Lt. in our risk management office, I decided that, after 15 and a half years at a job I had loved dearly, my only real course of action was to ask the Medical Review Board to retire me on a non service related medical disability.  They agreed without any hesitation and 3 weeks later it was all over.  Uniforms had been turned in, I’d been signed out by every office in the Department, and had filled out all the paperwork needed by pensions and benefits.  It was a very surreal experience.  For 15 and a half years, I had been a paramedic.  That was who I was, how I identified myself, and now, that me was gone.  Who was the new me to be?  I decided to keep up my certification for awhile in case I wanted to do something with it later, like work in an ER or teach.  I still have dreams that I am on a unit, in the firehouse, or running a call.

Looking back on this whole scenario, the one thing that makes me feel incredibly lucky is that the symptoms didn’t start until a few days before my fifteenth anniversary with the department, so I was considered fully vested.  I walked away with a 50% pension and full medical insurance.  I know that the majority of MS patients are not so lucky.

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2 Comments

  1. herrad said,

    February 25, 2010 at 3:01 pm

    Hi Debbie,
    What a story, glad you got treatment.
    Thanks for sharing your story.
    Keep warm.
    Love,
    Herrad

  2. Julie said,

    February 26, 2010 at 4:16 am

    Debbie,
    Fear of relapse and resulting disability can sometimes be just as hard as a relapse itself. When I get really scared I try to do yoga and breathe and feel the ground under my feet, realizing that I am ok in this very moment and I have no control over what the future brings.
    I’m glad you are getting treatment.
    Julie


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