“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.
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’m not a picky person. Really, I’m not. Normally I will tolerate any kind of abuse from a doctor as long as they give me accurate information about my health and write the necessary prescriptions. However, I’m now on my third neurologist. What happened?
YES! At my Gilenya followup today I learned that blood tests confirm I can continue Gilenya!
Although my current neurologist isn’t a fan of letting his patients view any of their test results I stole my paperwork for a quick read during the 3 hour wait to see him.
What I read initially sent me into a panic.
- Page 1: My immune system has been decimated. I am one germ away from sudden death.
- Pages Everything Else: Greek.
Several months have passed since I began taking Gilenya on May 5. Today I’m focusing on the drug’s possible side effects and how I have personally been affected. The good news is that I seem to be mostly fine so far. In spite of this year’s gloomy start with 2 separate attacks within it’s first few months, I have had no attacks since beginning this treatment. In hindsight I really do feel that Rebif, and probably interferons in general, are just not right for my body. Now that I have begun the drug I have started to focus on Gilenya side effects.
With my Gilenya followup appointment looming in a couple of weeks, I’ll soon find out if Gilenya suits me in the long run. As you can see, I do have my fingers crossed!
My first month on Gilenya has passed.
As a treatment, everything with Gilenya has been going well. Downsides are that I’m a bit drowsy sometimes and a bit cold (both seem so random). Sleep is very difficult. My skin is definitely more sensitive than usual, especially to sunlight which I didn’t think was possible.
Gilenya is rumored to possibly heal previous damage from MS attacks. For my part, I have no idea if Gilenya is healing any damage considering how badly I react to heat and this summer has been brutal.
Will and I spent most of last night in a smoky club in Charlotte. Getting to bed at about 4:30 am not the best way to spend the evening before my first dose of Gilenya.
It has been a bumpy road to get to the first dose. I completed a variety of tests to qualify, endured a prolonged and painful exacerbation brought on by the stress, and fought my insurance company for coverage.
I spent today in my neurologist’s office hooked up to heart monitors and trying to stay awake. I read, slept, and exercised to bring up my heart rate. For the most part, it went alright.
Lately I have had serious trouble with something frequently called the MS Hug (also known as Girdle Pain or sometimes Girdle Band Sensation). What is the MS Hug? There are a couple of theories on what causes this. One theory is that it is just muscle spasms like all the other muscles spasms experienced by people like me. And by “muscle spasms” I mean awful unbearable crippling pain (OK it’s not this bad every single time). The more popular theory is that the spasms are caused by lesions on the spinal cord – I’ve never had an MRI on my spinal cord so I can’t tell you if that could be a factor for me. It can be an exacerbation or a psuedoexacerbation. In my case I’m not sure. But I’m going to try to give you all the information I can about this abomination. Please remember, I work with computers and have no medical background.
Typical Insurance Business Model = Avoid Providing Service? I’ve glimpsed the battle between insurance and Gilenya.
Several weeks ago I got the call from Novartis that I had been rejected by my insurance for Gilenya. When I ask why, she reads to me “Cost exceeds limit per patient. No further review.” My insurance coverage has no limit on the cost of a prescribed medication – it is technically covered and my insurance company has just chosen not to.
Within seconds, I began an exacerbation. For the last few weeks I have been experiencing something that is commonly called “The MS Hug.” I can’t print the things I call it in my head. At its worst, it’s the kind of pain you don’t want to live through.