“They” say that you are considered newly diagnosed for the first 2 1/2 to 3 years after your Multiple Sclerosis diagnosis. It seems like only yesterday that I posted my “Year One” article. It seems like only yesterday that I was diagnosed! Somehow, enough time has passed that I find myself at a point where I have been living with Multiple Sclerosis for four years.
In January of 2010 I reflected on my life after living with Multiple Sclerosis for a year. At the time, I felt that I knew as much as I possibly could about the disease. I had undergone MRI, a spinal tap, and had begun using Rebif to slow the progression of my disability. While many things have stayed the same, the landscape of life as an MS patient has changed a lot.
Technology has allowed us to make more informed opinions about our neurologists. My neurologist is fantastic, but I had to fire two doctors to get to her. The availability of information has also allowed us to become more educated about medical marijuana and it’s protective and therapeutic properties (I foresee a continual demand from US citizens in future elections).
On a very personal note, one result from my diagnosis was a continued issue with weight for which I have now undergone surgery. Extra weight and reduced mobility can become a vicious cycle. Once I had realized that I was at a crisis point in my life, I knew I must take drastic measures. At almost 3 months out and 60 pounds less, I can honestly say it was the right decision for me.
Part of living with Multiple Sclerosis is dealing with pain. Sometimes this means horrible pain (such as the MS Hug). Loved ones have seen me through this pain and other challenges which has caused an evolution in most of my relationships.
In December of 2008, stem cell therapy had just begun human trials. Now it is vastly more popular and may one day become common. In the time since my diagnosis, CCSVI has taken off as a possible way to relieve some symptoms possibly even permanently for some patients.
Looking back, I can see signs of MS for as long as I can remember. Once diagnosed, it was painfully obvious and stress made everything worse. My husband and I evaluated our life and found ourselves woefully unprepared. From practical things like being prepared for emergencies to our finances – our life was disorganized. We began a transformation and overhauled every aspect of our life. We even evaluated our careers and I’ve recently returned to school to complete my bachelors degree. Healthwise, we now know that exercise is key to improving your prognosis although it was once believed to trigger relapses. We know that nutritional health is important but are still learning more about this.
Maneuvering around the hot southern summers can be a challenge, but I have re-learned to ride a bicycle (it’s easier than walking) and strive to do so as much as possible. Hopefully I will even be in the 2013 BikeMS (on the shortest trail possible)!
I have fought with insurance companies and have learned to despise the for-profit private insurance system so inexplicably preferred in the US. In the end, after a horrific relapse, I was able to switch from Rebif to Gilenya which has treated me well so far. While I am happy on Gilenya, we are on the cusp of access to a new oral drug which I suspect will become the treatment of choice: BG-12. Everyone I know with MS hopes to switch to this medication with its high efficacy and extremely low risk. If I find myself making a change in the future, this will be the drug I fight for.
My primary symptoms have changed from time to time. Weakness in an arm, weakness my legs, lack of balance, depression, vertigo, spasticity, fatigue, and now brain fog. The disease is unpredictable, and while we may see a cure in my lifetime I do realize that I am likely to always live with it. I’ve learned to roll with the punches as much as I’m capable. While I can’t believe 4 years have passed, I also can’t believe how much progress has been made.
For those of you also living with Multiple Sclerosis, hang in there. I know and you know that the disease progresses. It does. But so do we, and maybe we’ll catch up to it one day. Whatever may happen in the future, we can rise to the challenge.