Now let’s look at disease modification. It is necessary for you to choose a medicine that will reduce the number of relapses you have in the future. Those of us who are fortunate enough to have the Relapsing Remitting type of MS have a large range of medicines to choose from.
Things change so quickly with the treatment of this disease that I really think there’s no point me listing which meds are out there right now. But I will say there were only a few MS injections to choose from when I was diagnosed eight years ago, and now we have both injections and pills to choose from. If nothing on the table strikes your fancy, you are able to join any of the multitude of clinical trials that are out there currently.
My point is, it is up to you to look at all of the options you have for reducing relapses and take control over medicine delivery method, side effects, effectiveness and dosing times. It is your job to look into yourself to decide what you will be most comfortable taking and sticking to on a regular basis.
I waited a year and a half before starting my disease modification therapy. I hesitated because I was scared and I didn’t want to commit to taking medicine for the rest of my life; a lifetime of medication is a daunting prospect that no one looks forward to.
Taking your MS medication can feel like you are welcoming this disease into your life. I promise you that the opposite is true. Starting your medicine and taking every dose means that you are fighting hard in a war that was thrust upon you. You are a warrior and you are in charge. Do not forget that!
Finally, we can talk about symptom relief. This is where I give you carte blanche! When you have a relapse or when you feel like you need long-term symptom relief your doctor may provide a myriad of medicines that help you in any number of ways. You can take all that your doctor hands you or you can forgo them completely. Just remember to have an open and honest conversation with your doctor when you do it. It is important that you are given what you need in order to feel better, but some meds cannot be safely dropped cold turkey.
I was given anti-seizure medicine during my first event. It was supposed to take away the pain of pins and needles that I was feeling all over my body. Three weeks passed. I took the medicine as it was prescribed, but I was not feeling any relief. I decided the medicine was useless and threw it away. Did you know that dropping an anti-seizure medication, without stepping it down properly, can actually cause you to have seizures? I didn’t. It was an important lesson for me. I learned that some medicines are not going to work. More importantly, I learned that it is deeply necessary to talk to my doctor before dropping a med!
Living this life with multiple sclerosis is an intense thing to do. But I really believe, to the bottom of my heart, that we all have the capacity to carve out our own story within it. We can create a space for ourselves that is unique and beautiful. We have to search more. We have to communicate more. We have to teach more.
Most importantly we have to define what our experience within this world will be like. Take control where you can and continue climbing towards more.