National MS Awareness Week

March 2 - 8, 2009, is National MS Awareness Week.

An unpredictable disease of the central nervous system, multiple sclerosis (MS) can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted. Many investigators believe MS to be an autoimmune disease -- one in which the body, through its immune system, launches a defensive attack against its own tissues. In the case of MS, it is the nerve-insulating myelin that comes under assault. Such assaults may be linked to an unknown environmental trigger, perhaps a virus.

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In November 2007, I received my formal diagnosis of MS. Some 15 months after the onset of persistent profound weakness in three extremities (including my dominant right arm, which has been and continues to be flaccid, and both legs with intermittent but increasing flaccidity) as well as facial musculature and even muscles of breathing (thankfully, this lil'bit returned in short order), the loss of vision in my right eye, and the onset of intractable dizziness and destructive fatigue (all of which have persisted and worsened); after being told by various healthcare professionals I had nothing "serious" wrong with me, that I had medical schoolitis related to my job as a transcriptionist, that I was under too much stress from working so much and in need of psychiatric care, and that I was faking my symptoms; after losing my ability to participate in hobbies like bowling, painting, and reading; after finding myself confined to a chair or bed and unable to run and play with my children, I was told what I suspected all along in spite of clean MRIs and negative laboratory testing: I have multiple sclerosis.

I was lucky, having to wait only 15 months to get that diagnosis; many people wait much longer, not fulfilling all the criteria required to give that formal diagnosis and enable institution of treatment.

There is no cure for multiple sclerosis. Treatment for remitting-relapsing MS (RRMS) involves the use of disease-modifying drugs like Copaxone (the medication I had been on pre-pregnancy) and Avonex (the one I think I will ask my NL about post-partum), but they do not cure; rather, they attempt to slow down the disease and shorten or lessen the severity of exacerbations.

For some of us, treatment is only symptomatic and standard agents for RRMS do little to nothing to slow down or diminish the effects of this mysterious and unpredictable disease.

I have tried not to be bitter, but seeing how much I have lost and weighing it against what remains, I find myself having a more difficult time in that endeavor. Reality struck home a few weeks ago when my NL informed me that it was time to consider filing for disability, spiraling me into a deepening depression because the only "hobby" I had left was work - and I was facing losing that, as well. I do not allow MS to define who I am, but my work ethic, skills, abilities, and passion for what I do have been part of what defines me for the last 20 years of my life.

Without work, I become a lump. I have no desire to fill that bill of goods.

I spoke with my boss the other day, giving her a peek into what has been going on. I realize now I should not have kept her in the dark. Unfortunately, part of that had to do with the boss I had been under that was (thankfully) recently "downsized" to another part of the organization and the boss's attitude toward me since I got that formal diagnosis of MS; although it is violation of federal law to fire me due to my disability, that person seemed hell-bent on making sure to do everything necessary to enhance my misery so I would quit on my own. She (my current boss) told me to stop in to HR and talk to them about filing FMLA, with the provisions for intermittent personal medical leave, to preserve my position without jeopardizing it due to my frequent MS-related absences.

I was so distressed and depressed, FMLA never even crossed my mind. The only options the NL gave me were basically to live with it or to file for disability - as though the mental depression caused by either of these had little relevance. If she was offering disability as an option, I would have to assume she would have filed the paperwork on my behalf; I am hopeful that she would be willing to file FMLA paperwork in its place, to keep me working in whatever capacity I can for as long as I can.

My boss has thrown me a lifeline of sorts, giving me a bit of hope in looking forward.

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While no one wants to be diagnosed with MS, for some 200,000+ Americans, it is a reality. Sometimes - as happened with myself - there is a rush of relief at knowing there is something more wrong with you than "just in your head" and that you are not imagining things. There has never been a better time, really, to receive a diagnosis like this. For the majority of MSers, this is not a death sentence, and many go on to lead normal, productive lives. Research continues and, in time, there will be a cure. Current therapies involve injectables, but trials are underway for oral medications. Seeking out the cause will be a tremendous step toward finding a cure.

If you have MS and need assistance with medications or assistive devices, please check this out.

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UPDATE: I spoke with the Human Resources department today, and they have given me the contact information for the agency that coordinates the FMLA/LOA program for our institution. Ever onward and upward! Amazing, the relief you feel knowing there are actually people ready and willing to help you when you need it - and are not afraid to ask for it.