In October 2010 I first learned that Gilenya had been approved by the FDA. The first oral treatment for Multiple Sclerosis! So exciting – but I didn’t dare to really believe that I would be switched to it. I knew that insurance would never cover it as long as I was able to use interferon instead, and I had been using Rebif for awhile.
Work can be stressful and tough without a disease like MS. What’s a person to do when confronting a challenging career and a challenging disease? Plenty of people (and celebrities) have flourished in their careers in spite of MS. What can you do to be one of those people? What are your options if you simply can’t work anymore? What do you need to know about Multiple Sclerosis and disability?
Last week I began a new position at the company where I’ve worked for over a decade. The coming months are certain to be incredibly stressful. The primary challenges I face on a daily basis in a technical office career are cognitive issues, speech issues, walking (even though it’s primarily short distances), and fatigue. I abstain from many medications because they cause too much lethargy for me to power through a work day while taking them. While these are not all of the challenges I face with Multiple Sclerosis, they are the symptoms that affect me most in my job.
Many times when I meet someone, they are surprised that I do still work. I often think about how I could spend the time I’m stressed and tired at work instead resting, doing yoga, swimming, anything to help myself physically and mentally. Then again, who doesn’t dream about being somewhere else when they’re busy on the job? Certainly doctors and hospitals seem to expect everyone to have open schedules ready to spend hours and days in their offices.
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.
Welcome to DiagnosisMS.com!
I was diagnosed with Relapsing-Remitting Multiple Sclerosis December 10, 2008 and have since found myself on a mission to understand as much as humanly possible about the disease, its cause, its symptoms, and the mechanics of treatment for it. Some time ago I began to analyze Multiple Sclerosis and my personal experiences with the disease. My personal story will traverse multiple posts, but it is not an uncommon one for those of us with the disease.