I have received a great Christmas present recently. I never dreamed such a gift would be coming in the form of a letter from my neurologist. I had my annual MRI this October and due to the general ineptness of the system I did not get my results until much later as in weeks and weeks later. Before opening the letter, I closed my eyes and imagined the possibilities. There truly were only three possibilities including: There would be new lesions, there would be no new lesions, or a miracle would happen where my old lesions would disappear.
When I finally opened the letter and read that I had no new lesions I literally exhaled a year's worth of stress and worry. I felt tremendous relief.
My old lesions still remain but having no new lesions within this first year following my diagnosis is as close to a miracle as I can get. This is especially true because I have chosen not to take any of the Interferon drugs during this first year of having Multiple Sclerosis. I suppose I am an outlier in so many ways. This is but another example. Whereas most people opt for taking the MS medications right away, I made the decision to wait. I told my neurologist that I needed some time to carefully weigh the pros and cons of such a decision. It was not something I was going to rush into without taking some time to think about it. Being the type of person to carefully research any decision I make has its drawbacks. One possible way of looking at this was that I may have wasted precious time. What if I was making a mistake? I could never have that time back again.
The criteria I put forth to my neurologist was that if my symptoms progressed to a severe level and/or my annual MRI showed more lesions then I would consider starting treatment with one of the Interferon medications. Upon my first meeting with my neurologist I had already researched and told her that Rebif would be my choice should I decide to take the meds. I did have quite a few symptoms this past year and some definite episodes with one lasting weeks. But no new lesions resulted from what I had been experiencing. This is the odd thing about this disease is that you can never predict outcomes. My neurologist once discussed with me about the fact that the number and size of lesions does not always predict the level of disability. A well placed lesion could potentially cause more damage than numerous lesions. It just all depends. And likewise, sometimes symptoms and flare ups do not always result in more lesions. For doctors and patients alike, MS is one mysterious and unpredictable disease.
I realize how lucky I am to have this result. The thing that I do think about is if I had started on the MS drugs, someone surely would have attributed my good results to the taking of the drugs. And so I am living proof that it is possible to have no further progression within one year and not be taking any of the interferon drugs. I realize what I am saying may be considered somewhat controversial. The minute you get diagnosed, it is all one hears about are the MS drugs. In fact I would agree that we are fortunate to be living in a time where the doctors can give us something. Decades ago there was nothing to give so they sent you home with the diagnosis and no hope.
I do want to stress here that this was my personal decision to not take any of the Interferon drugs and I am in no way advocating anyone follow in my footsteps.
What I do wish to advocate is for you to do your own research, weigh the pros and cons, look at the possible benefits as well as the risks and make the decision which makes sense for your life. Friends, doctors, health care professionals, and family can suggest all sorts of things to you but the bottom line is that this is your life and your life alone. Nobody else can live it for you. There is a possible risk to everything we do and also for everything we do not do. Do what you feel is right for you.
I have to say that I did feel a little reluctant to share this good news as I know that for so many of you such a letter of good news will not be forthcoming. Many of you will be or have been told that your disease is progressing. There is almost this sense of guilt when you have a disease and you are doing relatively okay because you realize so many others are suffering. Believe me, I am not used to good news and it took me some days for this to sink in. I know my luck could change at a moment's notice. And I also realize I am still at that crossroad of making some sort of formal decision about my plan for treatment.
Personally, I am waiting for some of these oral meds we keep hearing about to be available. My own neurologist has told me that this may be an option this coming year for me. We shall see.
The bottom line is that I have a lot to be thankful for this holiday season. I was staring at my Christmas tree tonight, taking in the twinkling lights, and thinking that this is new chapter in my life. Each year from now on as I put up the tree, I am most likely going to have this disease. But maybe it is possible to not live in fear of my MS. Good things can happen. It doesn't have to be all bad. Not by a long shot. If there is one thing this disease has taught me thus far, it is to enjoy the life I do have. It does no good to sit and pine for the life you don't have or may never have again. It is time to start living now.
Every day countless decisions are made. Some decisions mean little in the scheme of things. And some change our lives forever. It is so hard to know if what you are doing is the right thing. Only time will let us know the answer and even then it can still be a bit murky. It is like we are all groping around in the darkness searching for the best path for that moment. I don't know what will happen next. But for right now I am grateful that I have the opportunity to share a bit of my life with you in words.
I wish you all much peace and joy this holiday season. May your days be merry and bright. Happy Holidays Y'all!
Published On: December 24, 2008