In June, on the morning of my birthday, I had an appointment with a neurologist, at IU Clarian North. A too-long drive was one of several reasons I had decided to switch neurologists.
My reality has been shaped, significantly, since January, 1994, when I was diagnosed with multiple sclerosis. I have blogged previously about the events that led up to the diagnosis. By the second day of what became a nine-day stay in the hospital, I was paralyzed from the waist down. I could not walk. Initially I was put on steroids.
I was wheeled all around the hospital for tests. Each time a nurse, therapist, doctor, or phlebotomist would ask what I had. Each time, seated in the wheelchair, I would choke up as I answered, “Multiple sclerosis.”
The neurologist who diagnosed had the benefit of: (1) the results of four MRIs and a lumbar puncture—or spinal tap; (2) labs from numerous vials of blood sucked out of me; (3) reports from various other tests; and (4) consultation with a neurologist who was viewed as the MS guru of Indiana. I was told the MRI results were clear: I had plaque on the myelin sheath of my central nervous system. The findings of the LP were significant for MS. The blood work and the CT scans and all the other tests confirmed. Also, the onset of symptoms had been so marked, MS was almost definite. Only with an autopsy could they be more certain and, as I told the first neurologist, I thought an autopsy, in my case, was premature. He didn’t laugh—and here I thought I had a pretty good one-liner.
I asked to see the MRIs. I never was shown them. I know. I am a lawyer. I had a right to see my medical records. I also had been given a traumatic diagnosis and was whacked out on drugs.
I read about MS. I also read about the economics of MS. One 1994 article said an MS patient represented approximately $250,000.00, over the course of a patent’s life to a lucky neurologist. In 1994 new, expensive drugs for treatment of MS were introduced—it seemed like every week. MS is easily misdiagnosed. Few can fault a physician who prescribes a wonder drug for a patient who faces a disease or condition that progresses as far as MS can go.
I switched neurologists. I went to Dr. Guru. In his office, people sat in wheelchairs, some from as far away as Maine and Florida—as Dr. Guru told me—because his success rate, as reflected by the average number of exacerbations, or “attacks” of MS, each year, was so low: 0.22. I thought that was great.
Shortly after my release from the hospital, I was on crutches. I discarded those and began to walk in the morning. I decided to try the Indianapolis 500 Festival Mini-Marathon®. I walked the 13.1 miles, in 1999, in under three hours. I promised myself I would continue to do the Mini until either I was dead or I beat MS. I would not let MS “beat” me. I was pro-active in how I addressed the situation. Dr. Guru seemed mildly amused by my efforts at exercise. Then, during one of my appointments with him, he said he had read a study by French researchers that indicated aerobic exercise helps to fight MS.
Dr. Guru seemed always to participate in a “blind study,” of which selected patients of Dr. Guru’s office were a part. Oddly, I seemed always to be a subject. I believe I was in four such studies. Dr. Guru wanted me to remain on the steroids and to take intramuscular shots of beta interferon. I said “no” to the steroids. After years of painful injections each week, I quit the interferon.
I switched neurologists in about 2006. My new neurologist did the usual tests for an MS visit. Those consist of components of the field sobriety tests administered by law enforcement in traffic stops of suspected impaired drivers, plus the doctor runs the handle of the mallet for knee tests along the underside of my feet, to gauge sensation. I automatically remove my shoes and socks as I wait for the doctor. This neurologist was surprised my injections of interferon, when I still had done them, were intramuscular—a very painful means of injection. She said I could inject the interferon subcutaneously, in the fat on my belly, far less painfully. She moved her practice. I stopped the interferons because I saw no need to take them. The next neurologist told me, up front, MS was not her specialty. That was cool with me. I was tired of the search.
In the summer of 2010, I felt light-headed and dizzy from the heat. I was concerned perhaps the MS—a condition not conducive to heat—had decided to spring up. I was put through an MRI. The neuro told me there was no indication of an exacerbation or active inflammation. I was curious, though, and asked, “Does it show I have MS?” She said there was no doubt I had MS.
None of these doctors showed me the MRIs or any other items from my file. I requested a copy of my file from Dr. Guru, but he had retired at the time of my request (2010) and my records were gone. The records from 1994 no longer existed.
I decided to switch neurologists at the beginning of this year. The office of the neurologist whom I had been seeing for about eight years was 40 miles away. My health insurance required I get a GP and that the GP refer me to a neurologist. I did all that. The appointment with my new neurologist was set for the morning of my birthday.
That morning, I waited in the examination room, shoes and socks already off. This neurologist entered the room, ignored my feet, did a few of the tests—horizontal gaze nystagmus is an old favorite of mine—and looked at the file.
He asked me who diagnosed me, whether that physician had run any MRIs, whether that physician had done a spinal tap, and if I was treated by anyone else. I identified the physician who diagnosed me, said yes to the other questions, and told him I had been treated for about ten years by Dr. Guru.
“Did he have you on a lot of steroids?” the doctor asked.
I said no, and explained how I had refrained from prednizone and interferons, for years by now.
The neurologist shook his head, sort of grinned, glanced at the file, and said, “I don’t think you have MS.” There was a pause. I was stunned. He continued, “MS is a progressive disease. You get worse. From what I can tell, you only have had one exacerbation.” I said that was correct. “You might have a rare form of MS called benign MS. I don’t think so. But no interferons for years?” I nodded. “That actually is very good. Otherwise I would have thought the lack of progression of the disease could be attributed to the drugs. I want to get some blood work and run some MRIs. If there’s plaque on the myeline sheath, then I’m wrong and you have MS.”
I went downstairs to have blood drawn.
Now I sat in the chair and the phlebotomist prepped my arm for the “stick.” She had a bunch of vials lined up. The doctor wanted to run a lot of tests. I felt deja vu—only seated in a blood donor chair instead of a wheelchair like in 1994.
“You have a lot of scar tissue inside your elbow,” she observed.
“I used to donate a lot,” I said. “Then I was diagnosed with multiple sclerosis.”
“You can’t donate after that,” she said. Her tone was polite. She stated a fact.
The scene was a flashback to 1994. “I might be able to now. I was just told...” and I choked out the words “might not have MS” before I could not talk because I was crying.
She was cool. She smiled. She stuck me, and I didn’t feel it. She said I’d be okay. She wished me the best. Once the last vial was full—I think she took eight vials, total—she put the cotton on the spot, wrapped the tape around my arm, and gave me some tissues.
I walked out of there and across the lobby. I did my best to smile. After all, there were people there, I was pretty sure, who were facing bad news for themselves or a loved one. They did not need to see someone else in tears. And mine were tears of joy.
I got to my car, started the engine, turned on the AC, and sat. Finally, I called a colleague. I told her that I had just seen my new neurologist, that I had really great news, but not to be alarmed because, as I told her the news, I would cry.
My statement was not accurate. I did not merely cry—I sobbed. My chest heaved. Between gasps I told her the diagnosis under which I had lived for 21 ½ years possibly no longer was true. By the end of the call, she was sobbing, too.
I drove back to my office and called a couple more friends. I was holding it together better. At the office I told everyone, then I left, unable to accomplish anything that day.
People met up with me, as we had planned for about a week, at Flatwater, then, after 4, at The Village Cigar. I still don’t know who ordered the hooker—or if the woman with the very polite, sexy voice who called me on my flip-phone was a hooker, or someone hired to play the voice role of hooker. I thanked her, told her I thought she was sweet, but politely declined those services.
People who have been my friends, in some instances for over thirty years, showed up. Half of them were in tears when they got the news.
I was in bed by 8:30. I crash early. The birthday was one of my best ever.
On July 23 I had the MRIs. Two were for compare-and-contrast. One was with dye. I waited for the results, but not too anxiously. I was pretty sure what those results would be. A couple of weeks later I received a call from the doctor’s office. The nurse told me: “There was absolutely no trace of MS on the MRIs.” I asked her to repeat what she had said. I set an appointment to see my neurologist..
On August 27 I met with him. He grinned as he entered the examination room. He told me I do not have, and never had, multiple sclerosis. I probably had a virus, the traces of which were long gone. He not only showed me the results, but gave me copies without my having to request them.
I still experience effects from whatever it was I had. Some are of a personal nature. Also, I am extremely sensitive to high temperatures, but the numbness in my feet disappeared shortly after the mercury amalgam fillings in my teeth were replaced with porcelain. I fatigue in the late morning, but lying down for 20 minutes helps.
On August 27 the neurologist asked, “Is that a big load off your mind to not have MS?”
I said no. It was a complete change of how I had identified myself for years.
In 1994 I was paralyzed from the waist down. All that happened. When I have walked the Mini®, it is with a sense of challenge.
In 2016 I shall walk my 18th consecutive Mini®, but this time I shall do so without that “foe” of MS. I was misdiagnosed—I understand. Also, though, I was pro-active, refused the interferons, and, as a result, was diagnosed as having never had MS. I feel I beat MS.
Each year, as I approach the finish line at The Mini®, I tear up as I remember the hospital in 1994 and how hard I worked to get out of the chair and onto my feet. This year, I might cry more—or laugh, I’m not sure which.