Thursday, March 19, 2009

The Story of my MS: Are Some Neuros Aliens?

What's With the Crazy Bird Picture?
I've had this picture as my desktop wallpaper for over a year. Why? I see the black background image as my MS. I see the foreground image as how I live life-in spite of, overriding, and shining beyond this invasive illness.
You see, MS is a dream stealer. I no longer bake birthday cakes, walk down the shaded paths of Hendricks Park, or even wash my own hair. I read often of the efforts of volunteers to rip out the invasive ivy plants that threaten the botanic life of this park. As with the dark plant life in the back of the picture, I can be intentional about not allowing MS to overwhelm my life.
It was subtle at first: too tired to go for a planned outing, my left pointer finger failing to connect with the correct key on the keyboard; a few trips and stumbles--my left toes seemed to have a mind of their own. My GP doctor seemed puzzled--my blood work was normal, my symptoms vague and variable--maybe my busy life of working, mothering, volunteering, gardening, playing were taking an extra toll? But, this had always been my 'adult life'--something seemed off. Later, seeing a hand specialist about a bump on the back of my left hand, I heard the first hint of pervasive neurological problems. Yes, I had a ganglian cyst on the back of my hand--but it was harmless. My weak, dragging finger could only be attributed to a neurological issue. It is too bad that the clarity of that doctors findings would become a vague memory as I dove head first down the rabbit hole of neurological diagnosis and Neurologists in particular.
Neurology is an Alien Universe
First off, I am fat and a woman--double strikes in the journey to diagnosis. The initial contact, about 10 years ago, was with a silver-haired, deeply respected Neuro doc who left me with his words, "You're fine neurologically, just lose weight, excercise, and de-stress." To this day I have never understood how my body weight corresponds with the growing weakness on the left side of my body. I know lots of fat people--many of them busy Moms--and no one else seems to experience neuro symptoms as a side effect of being fat.
Fed up with this guy, I trotted out my symptoms, experiences, and body to a younger, hip, newly minted neurologist with a ponytail-no less. By now my entire left side was week, falls were constant, and pain was becoming a new friend. From a spinal tap with over the top indicative numbers--this guy was definitive--"you have MS and I am here to help." (what a joke that turned out to be) I started working with a PT at his recommendation--this led to a referal to a wheelchair evaluator. After a tremendous amount of angst and denial, the evaluator made me see that, like a house on a rise during a flood, my independence was slowling ebbing away. Enter the wonder of an electronic wheelchair--I could go out alone: shop for hours, 'walk' to work, and even have enough energy to move through my day. With crutches and the wheelchair, I was free from weakness and fatigue--I had my life back.
Imagine my shock when my neurologist first saw me using the chair and promptly blew his top. I am glad to this day that my hubbie was with me that day or no one would believe how angry and derisive he became. What, for me, was my ticket to freedom, he saw as a sign of weakness and giving up. He no longer would be my doctor if I gave in to the 'crutch' of using a wheelchair. I was stunned and promptly, 'rolled away' from my neurologist.
Over the next few years my new neurologist, who was said to be a specialist in MS, just couldn't accept the diagnosis. She said that I had pervasive neurological symptoms, but was suspicious that the labratory that conducted the testing of my spinal fluid had somehow inadvertantly mixed my sample with someone's who had MS. Side trips to an internationally known MS doc at the research hospital in nearby Portland, confirmed my initial diagnosis. But, for reasons I couldn't fathom, she remained firm in her misgivings.
I am atypical--I didn't have brain lesions, my symptoms were one-sided (consider me a lefty), and, according to her without lesions--no diagnosis. It was the fancy doc in Portland who told us I had spinal cord, secondary progressive MS. At 38 years old I learned that I should only plan on living for another 10 to 15 years. Chilling, stupifying, and crazy making. But, back in Eugene, my local neuro refused to accept this diagnosis.
Over the next couple of years, things came together to cement my diagnosis--the local specialist left town and the replacement saw no reason to question my diagnosis. I completed a year of Novantrone chemotherapy, while working, mothering, and living, and saw marked improvement in only one area. Very dissapointing.
About two years ago, after my biannual visit to the Portland specialist, who didn't say one word about it to me. My local neuro suddenly refused to continue any of my meds or treatments. Over the phone, his medical assistant blithley informed that I 'don't have MS' and I no longer needed to see a neuro. Already on disability, having recently given up my dream job, and with losses in both legs, arms,and bladder, bowel, vision, hearing, I was stunned. I met with the doctor and he said that the doctor in Portland had called him and said it was his diagnosis that I had Conversion Disorder--a mental illness that Freud had popularized in explaining the vagaries and symptoms of hysterical females. Currently out of vogue, this potential diagnosis could bring the hope of cure, but left me with no options. The doctor dismissed me, saying no further treatment was warranted and walked out of the room without any guidance of where or what I should do. Now, with their notes in my medical chart my benefits were threatened and I was as sick as ever.
Enter a neuropsychologist, who I had seen for cognitive testing for several years. She educated me that CD was no longer used and that pschosymatic mental illnesses could be tested for. Why did neither of my neurologists suggest testing before diagnosing me? I took a battery of psychological tests and they showed that I didn't have one of the mental illnesses that manifest in symptomology. They also showed that I don't malinger over, or exagerate about the experience of my body. So, now what? The two MS experts in my area (hah!) had dismissed me out of hand.
Luckily, a new neuro moved to town and he and I agreed to start with a clean slate and confirm once and for all that I had MS or some other rare neurological illness. After two years of testing I am strangly proud to say--I definitely have MS.
Most importantly I have learned that: doctors don't define who I am or what I experience; I know my body and this disease; I have the right for professional medical care--but I probably will have to fight for it; and I can survive the devastation and vagaries of multiple sclerosis, but it is very likely that many neurologists are aliens (probably Vulcans) and they have too much control and too little empathy to wield it.

1 comment:

Rick and Mary said...

Thank you for this writing and for being a patient teacher.