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The Hardest Thing I have Ever Done

It is quiet.  The air is still. I hear a soft pounding in my chest and my feet on the asphalt.  My heart reminds me of the task at hand: kee...

Monday, October 1, 2012

Conversations with the Doc

(Warning: this blog entry is more about MS and less about my running.  I know I have readers from both avenues, so I thought I would clear that up right from the start.)

Over the years I have had many different MS doctors and many treatment plans.  It's funny; I am probably the most over treated MS patient in the history of autoimmune diseases... that is, in relation to my actual symptoms, which are minimal.  But, that's sort of the nature of this disease.  Just because it's quiet doesn't necessarily mean it's in remission.

MS is a slick bugger.  You never quite know what's going on with it.  Take my last scans, for instance.  I had new activity after six years of nothing.  There was not really an indication that anything had changed with me either.  The MS just reactivated.  I remember sitting across the room with my doctor, David Lippincott, hearing that I had a new lesion and then seeing the changed pictures of my brain.  He likes to show me a current view in contrast to last year's scans so that I can have some perspective.  I appreciate that.  Usually it's more of the same.  This year, it was different.  Still, I like that he takes the time with me to set it up and spell it out.  He wants me to understand him and he really wants to understand me.

Dr. Lippincott is pretty great.  I started seeing him after I had left another neurological practice because I did not like the responses of a new doctor.  It wasn't always that way.  For a few years, I had been seeing a wonderful neurologist who solidified my diagnosis, conducted my spinal tap and even prescribed my first intravenous medication.  I had built a level of trust with him and was very comfortable.  However, as life goes, he retired.  I was not given a choice in my new doctor. I was thrust into the care of a younger, less experienced neurologist.  But because I had been without symptoms for so long, I was really a very low maintenance patient, so I hardly saw him.  It wasn't until I started having site reactions from the injections, large bruises and ruptured subcutaneous vessels, that I started seeing more of the new doctor.  His response to my struggles with the injectables was that I should switch to a new medication that was being given as an IV infusion.  Certain side effects could include death, as some people are predisposed to a virus that goes dormant in the body (a relationship like shingles is to chicken pox) that is activated by the medication and then becomes fatal.

Fatal.  This is truly a case where the treatment is worse that the disease!

He was talking to me about a different kind of medication, only one that had a possible side effect of death.  Please understand that this was a few years ago now and that MS technology has come a long way with Tysabri and Novatrone, drugs of this sort.  I am not knocking these options.  I am also not trying to say that I know better than a medical doctor.  Yet, there I sat in front of this young doctor complaining of one rather mild, albeit gruesome side effect, only to hear descriptions of a possible trade for another that could include death! Also, at the time, the IV drug's side effect of death was something like 1 in 16,000.  Those were odds that I was not willing to gamble with, being a mom with young children.  Another thing to consider was that, at the time, they had no way to scan or test individuals to see if they might be predisposed to that dormant virus (it is my understanding that they do now and also that the odds of reactivation are much, much less).  But, to sum up my tangent here, I had never even had the classic MS exacerbation, let alone had I been struggling with relapse and remitting MS.  In fact, I had pretty much been symptom free since diagnosis, even before my current injections had been prescribed.  Did this guy even read my chart?

I fired that doctor.  I went to my gynecologist, who I had the most trusting relationship with, and I asked her to place me with a different neurologist.  She placed me at Dr. Lippincott's practice and I have been with him since.

When I first met him and after he heard my story, Dr. Lippincott said something that was amazing to me. He said that if I had been his patient from the beginning that he might have opted to not put me on the intravenous drugs at all.  He said that he would be interested in having me take a 'drug holiday,' as he called it, where I could get off of the injections and use lifestyle and diet to control my MS for a bit to see how things go.  This all sounded too good to be true!  In the 4 years that I had been on the injections, I had gained 30 pounds, I spent three days a week sick with side effects of flu like symptoms, I woke on injection nights with fever shakes, I had chronic dry eyes, purple bruises at the injection sites, I could not run a 5K in less than 35 minutes, and it was difficult to care for my young children let alone go to work each day because of the fatigue associated with the interferon drain.  HIV and Hep C patients whom I have talked to over the years share the same side effects.  But Dr. Lippincott was telling me that there was a light at the end of the tunnel.  He said that he wanted to get to know me and to get to know my disease over a few months and then he would consider taking me off of the drugs.  The key there was that he wanted to get to know me.

About 7 months later, during another visit, he finally told me that it was time to start the 'drug holiday.'  This was one of the happiest days of my life, all thanks to some great and long talks with my doctor.

This October, it has been two years since I have had an injection.  In that time I have completed countless 5K and 10Ks, three half marathons and two full marathons.  I have also lost 35 pounds since then.  Up until last Winter, I have remained symptom free and my MS has been unchanged, and even though I had one more lesion appear in my scans, I still have no apparent symptoms, nor have I had any exacerbations.  I just got off the phone with my doctor and it was decided that we would skip the interim scan and wait again until winter for another MRI.  I feel pretty good about that decision, too.  I am starting another training group this weekend for a November half marathon and I am looking forward to it.  I love to run when it's cool!  Above all, I am grateful for today and for each day that I get to feel disease free even if that nasty old MS is just below the surface, quiet for now.  I am grateful for the kind and caring doctor who took the time to listen and to really hear me.  Thanks Dr. Lippincott!  This has been a great 'drug holiday!'

Here is a picture of me running the Steep Hill Chase 
after being on injections for about 2 years:

Here is a picture of me running the Women's Half Marathon last month 
after being off of injections for about 2 years:

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