My Diagnosis Story – Part 2

Twenty-eight years ago, I was given the jolting news that I likely had multiple sclerosis. My imagination raced and practicality brought me to a place of concern. Being in my first months of my first pregnancy, I had been excited and eager to love and care for a baby. Now I would lay awake at night uneasy and unable to fall asleep at the thought of waking up with a body that couldn’t obey my brain’s command.

After the delivery of my near-perfect baby, I arranged for the MRI that had been recommended and ordered.   It was about seven months after my vision issue.  The test showed no sign of MS. I had a follow-up appointment with a neurologist, whom I could only partially understand. By then, I had read parts of the books I had checked out from the library and learned as much as I wanted to know about the disease. I asked some valid questions. The doctor responded with “you’ve been doing some reading about it, haven’t you? He informed me that there was nothing that could be done.  I left his office with a little more information and instructions to return if I had more symptoms. But honestly, it felt like I gave him more information than he gave me, and my mind was racing too fast to grasp much the information he did share. I left without a diagnosis or any real plan.  He did give me a small eye chart and suggested I take a hot bath to see if my vision blurriness reappeared with heat.  That was a diagnostic tool they used years ago until they realized that some people with MS had what is termed “primary-progressive MS” and that the heat from a hot bath actually caused permanent damage for those patients.

While the possibility of a debilitating illness stayed in the back of my mind, as time went on I was relieved that I hadn’t woken up paralyzed yet and life was moving pretty smoothly, so the thought of MS moved further away on my radar. I went through most of my days with the possibility of MS tucked neatly away in the background of my thinking and planning.

Ten years, two more babies and three moves later, we were living in Texas, newly connected to the internet and a world of information flooded from the world wide web to my computer. I researched all I could on the screen. Discovering that I had indeed been experiencing more symptoms and that there were new medications on the market called “disease-modifying drugs” (DMD’s) which could slow the progression of the disease, I made an appointment with a doctor and matter-of-factly shared that I had MS and was interested in a newly approved medication. Seeing a very able-bodied person, the doctor dismissed the urgency I felt, but did agree to give me a referral to a neurologist because of my history. My medical care took place at an Army hospital, so I got in the elevator and went to the neurology department located on another floor. A neurologist robotically marked a large “x” in the box next to “routine”. I knew that a routine appointment would take months to procure. Because I felt an urgency to start medication and completely dismissed by anyone who might have the power and ability to help me, I did what any level-headed person would do – I burst into tears. That stoic neurologist had no idea what to do with me in that emotional state, but the lady at the reception desk took it all in and mustered some sympathy for my tears. She approached a different neurologist in the clinic who was willing to see me. That secretary escorted me into his office where he listened thoughtfully to what I had to say, did some testing, diagnosed me with what I knew I had, and gave me the prescription I wanted. I am thankful for that compassionate secretary who swooped in to rescue me and for that neurologist who gave value to my words.  I was diagnosed about 10 years after my first noticeable symptom – 10 years after I was told I likely had it.

Back then, in 1996, Avonex was the second disease-modifying drug on the market. It had the advantage of being administered once a week as opposed to its predecessor, Betaseron, which was taken every other day. I was on Avonex for ten months. The IM (intramuscular/longer needle) injections and side effects of the medicine were more difficult for me than my MS symptoms at the time, so I stopped taking it after giving it that ten-month effort.

I wasn’t on anything for about two years until 2000 after Copaxone had entered the market. I saw a great neurologist during that time, and started daily injections of glatiramir acetate (Copaxone). Back then, the medicine came in vials and had to be transferred to syringes, making the administration process longer.  The autoject gun was new and made the injections much more manageable.  I have not missed many doses between then and now, 14 years later.

Here I am in 2014.  While I have known I have MS since I was 26, I was able to shove it into a dark corner of my life for many years.  Other than that first symptom of optic neuritis, I have been spared dramatic relapses.  Looking back, I can identify small changes/relapses and recoveries/improvements/remittances.  Somewhere along the way, my MS moved from relapsing-remitting form to secondary progressive.  It wasn’t until about seven years ago that I started a journey of transforming from normal walking to spending most of my days on wheels. I try to keep perspective by remembering that it’s 2014 and I live in America where ADA laws make my life incredibly easier than those in a similar position in other countries, and more enjoyable than it might be otherwise.  I’m thankful for the many great health care professionals that have guided me on this path and the numerous medications that make my days more comfortable.

There were no disease-modifying drugs when I discovered I had MS.  Now there are new medications coming on the market periodically.  Surely a cure is in the not too distant future and MS will be just a memory and a term in a history book.  Considering the number of years I have been traveling this MS road, I can look back and see that I have been fortunate overall.  I thank God for the full life I have had and for the many people around me who care and lend a helping hand.