Let’s be honest – in many ways the holidays suck.
“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.
My one year anniversary of taking Gilenya occurred in May, but my first MRI results and latest blood test since beginning treatment occurred only recently. Multiple Sclerosis can be a very unpredictable disease, but prior to treatment with Gilenya I averaged 2 – 3 relapses per year. My neurologists have told met hat the average gap between relapses is 18 months which I have never achieved. However, I am getting closer every day as this is the longest relapse-free period I have ever had since diagnosis. My Gilenya test results during my last office visit were overwhelmingly positive.
Information is developed and spread so quickly now. When I was first diagnosed with Multiple Sclerosis a few years ago, patients were advised to avoid exercise as it could bring on worsened symptoms or new attacks. Now we know that this is mostly a fallacy. An active lifestyle for a person with MS means lessened disease activity in the long term and improved fatigue, strength, flexibility, mobility, cardiovascular fitness, bladder function, and bowel function. Those are some very attractive incentives!
Every summer I am amazed at the heat. Ridiculous – right? I have a virtual 2 degree window of comfort (I’m so annoying). Cold temperatures are made bearable with cardigans and blankets. Warm weather, on the other hand, seems to melt my brain. Heat and Multiple Sclerosis work together like two villains in a comic book.
Individuals with Multiple Sclerosis are notorious for heat intolerance resulting in an endless variety of possible repercussions – this is known as Uhthoff’s phenomenon (or Syndrome). Summers may be beautiful, but they are also difficult for us.
Happy anniversary to me! One year ago today I took my first dose of Gilenya. My heart rate waxed and waned that day, but in the 12 months since my life has steadily improved. I don’t expect roses today, but I am ecstatic that the drug is working for me. Until this time last year, I was in a pattern of a relapse every few months. I have now been relapse-free for one year and counting! So far, Gilenya results have been fantastic.
I began the journey secretly hopeful that I might be one of those few people who miraculously have so many of their lesions shrink and heal on Gilenya, but I was also reasonable. Most of my damage is well over a year old, and most neurologists will tell you to stop expecting any improvement after one year. May 5 2011, deep down I believed that I was stuck with what I had in spite of any contradictory fantasies.
I’ve written much about Gilenya, but it was not my first treatment. At the time of my diagnosis, Rebif (Interferon Beta 1-A) was really the top drug. Tysabri was the latest thing, but it had only just returned to the market after being yanked so my neurologist avoided prescribing it. In my post-diagnosis panic I felt adrift – unable to make a choice I let current trends determine my direction. If you are trying to choose a drug for MS, take a look at our guide to MS.
With 2 aunts successfully using Beta Seron, one might think that I would do well on interferon. However, my father was taken off Avonex and switched to Copaxone when his liver enzymes were too high to be safe. Rebif was a gamble, but my options were limited. The ease of pre-filled syringes and an auto-injector appealed to me over the possibility of mixing the medicine myself or using a larger needle.