Wednesday, July 11, 2007

A Short Essay About My MS...

The following is a short essay I wrote last year (and added to a bit for update this year) that I thought I would post today...mainly because it is TOO DAYUMED HOT TO THINK about writing anything else! LOL

Enjoy...or not...too hot to care...

I was in the middle of a staff meeting when the “call” vibrated on my cell phone. My Nurse Practitioner had been trying to reach me for the past 24 hours following the MRI. She had left me a message the day before, telling me she needed to speak to me directly.

I quietly excused myself from the meeting to take the urgent call. I remember half wanting to ignore the incessant vibration of my phone and also desperately needing to know what information was about to be told to me. I had been in constant nerve pain for well over four weeks and an urgent call twenty-four hours following a medical test could not be good. Those types of calls only came when test results were deemed “important”.

The radiologist who read your MRI has given a preliminary diagnosis of Multiple Sclerosis, but you need to see a neurologist as soon as possible. Don’t worry. It hasn’t been confirmed yet.” This was what my ARNP needed to tell me so urgently, but I could tell by the tone in her voice she already believed the radiology report.

I disconnected the call and stood in the busy lobby of my office building staring at the floor. People continued to pass me by on their way to the elevators, but I was oblivious of their movement. I felt as if I had been punched hard in the stomach and I might collapse at any second. Time slowed and the whirl of passerby’s seemed like a distant dream of movements and voices. “You have Multiple Sclerosis”, kept playing over and over in my mind like a warped and broken record.

I don’t recall how long I stood in that spot, mesmerized, stuck in space and time. A coworker eventually came outside the meeting room and startled me from my inertia. She could tell from my blank and distant stare something was wrong, so she asked what was the matter?

Tears began tumbling from the corner of my eyes like a cascading river as I announced to no one in particular, “They think I have MS.” Suddenly even I thought I had Multiple Sclerosis. The past 5 years of bizarre neurological symptoms all appeared to fit nicely in a package called MS. I finally KNEW what had been wrong with me all those painful years…and now, I suddenly wished I didn’t know.

My confirmed diagnosis of Multiple Sclerosis came almost five years after I experienced my first neurological symptom, which was misdiagnosed as “labrynthitis”, a condition affecting the middle ear. At that time, I had two episodes in the same day where I fell because of balance problems, followed by about four weeks of dizziness and vertigo. Over the course of the next few years, I would have episodes of excruciating nerve pains in my arms and lower back, periods of vertigo, overwhelming fatigue, numbness and tightness in my legs, and cloudy vision, all of which would last several days to weeks and months at a time. A MRI was done in 1998, but had only revealed herniated and degenerative disc disease in my spine. There were no little, white plaques in my brain or cloudy patches seen in my spine. Yet the symptoms persisted and the “silent” disease process of MS continued to attack my nervous system.

By April of 2003, the sclerotic plaques could be seen on MRI surrounding the corpus callosum of my brain and also in my cervical spine. These visualized “plaques” were what was needed to confirm my diagnosis of Relapsing and Remitting MS on tax day, April 15, 2003. Less than a week following a MRI, evoked potentials, and a spinal tap, a neurologist advised me I had definite MS.

I spent my first year post diagnosis trying to keep my head above the waters of a serious depression and not be suffocated or consumed by the knowledge of the diagnosis. Being an “information junky”, I researched every possible avenue of available information about the disease, including drug therapies, alternative medicines, diet exchanges, and even treatments and “cures” that had no scientific basis whatsoever. And, I tried many of these options in a feeble attempt to control the MS that was repeatedly surfacing inside my nervous system and giving me external neurological symptoms.

That first year of diagnosis was one of the toughest years of my now four-decade life. I was forced to suddenly look at life possibilities I had not previously envisioned or planned on. What if I became disabled and unable to walk or drive? What if my fatigue became so overwhelming I couldn’t function? What if I could no longer support myself financially and had to leave my job on disability? What if MS took away the things I loved and enjoyed the most, like my sight, hearing, or speech? What if I developed incontinence? These “what if” questions frequently awakened me in fits of sleep and were constantly nagging my every thought, leaving me with a clinical depression that only worsened my condition.

I was placed on Copaxone, Avonex, participated in a Rituxan Study, tried on Tysabri, received IVIg while hospitalized, and finally strong-armed into taking Novantrone because my MS would not seem to remit. I experienced 3, major relapses between 2003 and 2007, and each one left me with a bit more disability. Now on my third dose of Novantrone, I feel as if I am finally gaining some control over my Multiple Sclerosis and FINALLY getting some semblance of my life back. The ugly beast of MS has dove out of sight for the time being and I feel like I am now able to relax a bit and “float” in my life’s waters.

For those of you newly diagnosed with Multiple Sclerosis, I have nothing compellingly important to offer to ease your discomfort and certainly no words of wisdom about what YOU should do regarding your MS. That’s because MS affects each of us individually and there is no set pattern for the disease’s development or progression. The vast array of neurological symptoms that can affect each of us manifests differently as well as the speed at which MS can progress. Multiple Sclerosis is a disease of the “unknown” for which there is currently no cure, only medications that can hopefully slow the disease progression. The multitude of unknowns can be overwhelming at times.

What is important to remember is this: You are not alone. There is an estimated 400,000 people in the USA currently diagnosed with MS. Some, like you, have only recent experience with the disease while others have decades of experience to share.

I encourage you to become your OWN expert about Multiple Sclerosis. No one knows your particular MS better than you do! Explore the many websites, blogs, and educational seminars available so that you can make informed decisions about your future and the future of YOUR disease. There are unfortunately no “right” answers about Multiple Sclerosis, its cause, or its cure. Because of this, you are faced with making many difficult decisions based on advice from educated guesses and other Mser’s experiences. But those decisions still remain YOUR CHOICE. Do everything you can to choose wisely.


Miss Chris said...

When my doctor told me I was diagnosed with MS, I swear I had an out-of-body experience. It really seemed like that because I was looking down on myself and the doctor, and our voices seemed distant. Maybe that's what shock does to you.
I hope you are getting some relief from your heatwave. Humidity sucks!

Peej said...

Boy, can I ever relate...

30 years of some of the weirdest, sporadic symptoms ever. 30 years of being misdiagnosed and looked at like I was insane... Then to be told "Well, it SOUNDS like a classic case of MS but that really can't be it. You look too healthy and you're much too old!". Too old my arse. Once the dr. realized I would carve his heart out with a tongue depressor if he didn't order an MRI I FINALLY got my dx! I was 49.

Insert silent scream here. LOL!

Moral of the story. Never take no for an answer if you think you're right. Doctors make mistakes just like the rest of us mere mortals. :)