Sunday, April 02, 2006

But Is This "Normal"?...

Let's face it, my friends...there is absolutely nothing "normal" about Multiple Sclerosis!

When I was first handed the diagnosis of RRMS in April 2003, it followed a routine cervical spine MRI to check on a problem I had been having with degenerative disc disease. Or at least that's what I thought had been the cause of my nerve pains for the previous 4+ years. I had been diagnosed with herniated disc disease in 1998 after collapsing at work with severe pain in my neck and shoulder. And, following my first roll in the tube (that's what I call the MRI scan process) after my collapse, I was shown a couple, bulging little areas on my cervical discs which had to be the culprit of the pain. There was nothing else to be seen. No tumors, no cancer, and certainly nothing big enough in my opinion to cause such excruciating pain. Just a couple benign blips like you might see on a balloon that got stretched too far. The radiologist even threw in a brain scan at the time (although I doubt at any kind of discount rate) just to be sure all was clear.

My first treatment options for my "blip discs" were to be sent to physical therapy and take some oral Prednisone. I took the medication and went willing to physical therapy, basking in the idea I could receive weekly massage now and stip my insurance company into paying for it. Slowly over the course of 3 - 4 weeks, the pain did subside and I returned to my usual activities of daily living, minus the weekly massage.

Over the course of the next 5 years, I would have periodic bouts of nerve pain in my left arm/shoulder, which would sometimes move around to my lower back and hips. Being a woman of size and no friend of Jenny Craig, I assumed the back pains were probably being brought on by bad habits and stress. So I would return to my ARNP, get my script for Prednisone, and shuffle back into the physical therapist's off for more of that lovely massage, traction, and body mechanics training. Since I wasn't willing to drop the weight wrapped on my hips or make other lifestyle changes, I just accepted these pains were the cross I must bear and I would no doubt live with them until I croaked. Small pay off in my estimation to eat and live how I wanted.

Oddly however over that five year span, the pain episodes intensified and lasted longer and longer, causing me to take higher doses of Prednisone (and more massage). I began missing work because I couldn't sit or even sometimes walk. Sometimes the only way I could find minimal relief from the arm pain was to wrap my left arm over my head in a bizarre contortion. This positioning was not a conducive one in assisting me to gain points with my employer!

At some point in these years, my hair stylist discovered a shocking event, telling me in horror I was now developing a rather large patch of baldness on my crown, and half of my right eyebrow had mysteriously disappeared. Not wanting to be over reactive, I simply changed my hair style and my attitude and decided I would wear a barret if push came to shove and maybe take up speaking with a French accent.

Then came the periods of blurred vision if I over heated, which believe me I have tried to avoid most of my life! Not the blurring part, but the over heating. I like to use my sweat wisely. There also came periods of feeling so darned tired it took too much energy to yawn. I had a bout of hypoglycemia in the summer of 2002, developed strange sores in my mouth, and had PMS so badly I may have made a federal terrorist watch list. And all of these symptoms came and went at random with no real connecting thread I could make sense of.

What I had neglected to connect to my ARNP in 1998 and later neurologists was a period of severe vertigo I had just before my dramatic collapse at work: I had experienced a 3 week episode of dizziness, which resulted in a diagnosis of Labrynthitis (an inner ear disorder) from a doctor I had only seen one time in the past. I now know this was most likely the beginning of my MS, in spite of no radiological evidence to support this theory at that time.

Finally in April, 2003, I was rolled in the tube for that "just checking" glance at my spine once again and a large spinal lesion found it's way into my pictures. Not only was the spinal lesion glaringly obvious, I was told my brain now had "typical" lesion patterns to support the diagnosis of Multiple Sclerosis. I had "The Dawson's Fingers"...those fanning, little fingery-like white spots that line the corpus callosum (center area) of the brain and some other patchy white spots spread around inside my noggin.

It was official. Someone had stolen the "P" from my "MS" and I could no longer blame my symptoms on hormones or bad habits. I was handed the diagnosis on April 15th, 2003, just in time to celebrate sending my check in to Uncle Sam and pay my taxes!

So, why have I so painstakingly dragged you down my road of symptomology? To let you know and give you hope THERE IS NO CLASSIC PATTERN FOR MS AND NO ONE DIAGNOSTIC SYMPTOM. There is absolutely nothing "normal" or typical about Multiple Sclerosis and you have my permission to slap the friend, family member, or doctor who tries to tell you there is! My MS was diagnosed on the basis of pain, which if you review the literature, you will see "pain" has only recently been considered a major factor of MS symptoms in the past decade. Typically, you will hear stories of optic neuritis, weakness, tingling, burning sensations, bladder incontinence, vertigo, dizziness, balance problems, blindness, constipation, cognitive deficits, spasticity, fatigue, contractures, and so on. And if you have MS, you may or may not have ever experienced more than one or these symptoms or you may be experiencing them all at once (and bless your heart if you are!). Just because my friend Bob is blind in one eye doesn't mean I, too, will eventually be in the dark.

MS is not NORMAL, but if you are experiencing it, YOU are unique. Your symptoms are yours and mine are mine and of the approximately 400,000 Americans diagnosed and living with Multiple Sclerosis there has never been one, set pattern of "typical" symptoms. If it's a problem for you or interfers with your functioning, treat it if you can, but know your symptom will effect you individually and uniquely.

I believe it is in sharing of information with one another we find common ground in uncommon places. I hope you've found something useful here. I think I've worn myself out now and need to schedule a massage...

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