Hard Decisions…

Written by on March 31st, 2015 – 2 Comments

I’d like to start my blog by saying this is just my story and I’m not advocating for anyone to do anything other than listen to yourself in making choices regarding your life and MS.  I was diagnosed with MS in 2010 and have been on medications since a few months after diagnosis.  I selected an injectable medication at the time based on lowest side effects, ease of use for travel with work to remote locations (expiration outside the fridge) and so forth.  This medication was injected into deep fat layers under my skin.  I wanted to live my life the best way possible with as minimal interference.  Adjusting to the drugs was difficult – the huge itchy welts that didn’t go away etc but I was committed and after about 3-4 months of this I got through it and things became better.  It took much out of me to deal with this and I won’t down play the difficulty.  I felt, at the time, I was set for a long while despite the nurses forewarning “some people have injection site issues and cannot tolerate being on injectables in the long term and some people have no issues!”  I never missed taking my medications and I depended on this as one of several things to manage my MS.  After 2 years of being on my medication, I observed the dreaded injection site reactions – the lipoatrophy (death of fat layers) first in my arms and then finally in other injection locations despite vigilant rotation of injection site locations.  I realized my time on these medications was slowly coming to a halt and this issue essentially eliminated a whole suite of other drug options (because they required injection into the same type of tissue).

Last year I set a timeline in which I would chart my next steps in moving forward. I gave myself a year to figure things out.  I had to make difficult decisions and I wanted to be informed about what was next for me – at first it was mass learning about which drugs were available.  I learned much about the oral medications coming on the market and of their side effects.  The reality is all the drugs have side effects and all were harsher than the medications I was on.  I spent several months feeling like my only option was to change drugs and I was set that this was my path forward.  I was scared to make change –any change that might make me take a turn for the worst.  To me no drugs was fear and thus not an option.

A few months ago, I met a few ladies who took an alternative approach to their MS with much success.  They had followed a similar mindset as me in terms of life balance, health etc.  Their choices were to stop taking the medications and focus on other aspects of health – proper sleep, healthy eating, reduction of stress and life balance.  Having a strong mindset of positive intent I noticed was a theme that I could appreciate along with a good support system.  They were doing just as well off the medications as I was on them…I learned something from them and something about myself in our discussions.  It made me pause to think about my choices of why I felt I had to be on my medications.  I challenged myself to define what drove my choice to automatically assume my only choice was medication at this moment in life.  To me fear was not a good reason to keep taking meds…

I am a science-minded person – to me knowledge provides comfort in managing MS.  In the primary science literature, there are few papers that provide you with information on the long term outcomes of being on an MS medication – I wanted to know if it increased my time in the relapse remitting stage of the disease or prevented me from moving into the secondary phase of the disease (if this was my 50/50 fate).  I would take the medication if either was the case no questions asked.  But the literature that is available states that there is a very minimal benefit to this aspect of MS – the drugs don’t help very much with extending your time in the RRMS state nor do they prevent the switch.  My neuro and I discussed this and he also noted that this was the case although it is obviously a hard thing to actually study.

So last month, I had to make that very hard decision.  What to do next?? I had the most honest and real conversation with my neurologist about the next steps.  I listened to what he wanted me to do and then I decided what I wanted for me…and in the end, I chose to take a medication break to see if I was OK off my medications (this was not my neuro’s first choice for me).  It was the scary choice; the one I’d never thought I would actually pick.  Despite my choice, my neurologist took into consideration my decision and we together developed a plan forward.  I will have an MRI in 6 months to measure disease activity and if things are active I will go on a new medication.  I can change my mind at anytime and I may do so if I have a huge bump in my MS road before then.  In the mean time, I am becoming less fearful everyday of my choice and happy to have made this decision as an advocate of my own health.  I don’t know that this will turn out well for me but I wanted to try so I am.  So far so good – and I will work to maintain this everyday.  I have developed a simple mantra that I remember when I am feeling symptoms bug me and it helps me move forward with positive intention.  “I am good and I will be good”

 

The views and opinions expressed in this article are those of the authors and do not necessarily reflect the views of the MS Society of Canada. The MS Society does not approve, endorse or recommend any specific product or therapy but provides information to assist individuals in making their own decisions.

2 Responses

  1. Lindsay says:

    Hi. I was told I have MS and am not going to take the MN Pharmaceuticals. I have changed my diet. I am on a drug but it hopefully will help even more. I am walking better. CHeck out Pam BArtha. if you have time the book she wrote it very helpful.

  2. Tracey says:

    Hi Lindsay. Thanks for your reply to my post. Being an advocate for one’s own health is important and hard to do when first diagnosed (or it was for me because I didn’t know how to navigate the medical system at first on top of being overwhelmed amongst all the other stuff going on). Sounds like you are doing so for yourself; I hope that things continues to improve for you. I will check out the book you recommended; I am always open to reading more about health etc. T

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