A diagnosis of MS is not generally accepted unless a neurologist confirms the diagnosis. In actuality, many general physicians are aware of the illness and recognize the characteristic problems that patients have with MS. Some have a heightened awareness of the disease, whereas others are more proficient in carrying out a neurologic exam. However, other than neurologists with subspecialty training in MS, few have the training and experience to carry out a quantitative neurologic examination.
Regardless of who the examining physician is, certain diagnostic criteria for MS must be met. The first formal criteria for the diagnosis of MS were outlined in what is commonly called the “Schumacher criteria.” Dr. George Schumacher was the head of a National Institutes of Health committee that was charged with the responsibility of coming up with simple standardized minimal criteria that were to be used in making a diagnosis of MS in patients entering clinical trials in MS. The criteria reiterated the need to establish that the lesions (plaques) were “disseminated in both time and space.”
In other words, to make a diagnosis of MS, there must be evidence of at least two separate affected areas in the brain and spinal cord, and the lesions must have occurred at least at two different times separated by at least 1 month. Bearing in mind that this preceded diagnostic imaging, this was a challenge. A little more than 20 years ago the (National Institutes of Health) Poser committee was brought together under the chairmanship of Dr. Charles Poser. This committee recognized that laboratory support for the diagnosis of MS from diagnostic imaging and improvements in spinal fluid examination was a major advance.
The terms clinically definite, clinically probable, and laboratory-supported diagnoses come into use in academic circles but were rarely used elsewhere. Nevertheless, the committee recommendations (the Poser criteria) focused interest on using MRI as well as spinal fluid immunoglobulin abnormalities in the diagnosis of MS. Spinal fluid analysis, however, has suffered from the lack of standardization of diagnostic testing.
The FDA is in the process of addressing this issue and has now outlined certain methods that must be used for detection of oligoclonal bands. These are bands that appear in the gamma globulin region of spinal fluid during electrophoresis testing in the laboratory. If present, they provide strong support for the diagnosis of MS. This action is required because proper testing is more expensive and the mandate for this testing is needed to ensure appropriate insurance coverage.
Karen’s comment:
On December 12, 1996, I began the day as a mostly healthy professor of legal ethics with a nagging case of an “inner ear virus.”
I ended the day as an MS patient. In between the start and end of the day, I drove to the university to pick up my students’ exams for grading and then to the doctor for him to examine my ears and give me my annual pap test. During that fall term, I was flying each week between New Jersey where my husband was studying at the Prince-ton Theological Seminary and Florida where my middle sister, niece, father, and stepmother live.
I taught Legal Ethics at New York University School of Law in the north and University of Miami School of Law in the south. For 3 months I had extreme vertigo that was seemingly caused by “an inner ear virus.” I reassured myself that when I stopped this crazy schedule, I would heal. By December I was taking large amounts of Antivert, Dramamine, and ginger ale to get through a 3-hour class. If I moved too fast or a student waved a hand or turned a page of a book without warning, I would fight the nausea that comes from vertigo.
I memorized my lectures so that I did not have to look down at my notes. I would sometimes have to vomit during the breaks in class, wash my face, and then continue to teach. On the day I picked up the students’ exams to grade, I went to see my general doctor. He immediately said that I did not have a virus and refused to let me drive myself to the emergency appointment he made with a neurologist.
My father took me to the neurologist, who said I had either a large brain tumor or MS and scheduled an MRI for that day as well as a spinal tap for the next day. The MRI center was having a holiday party, and while we waited for the results to take back to the neurologist, the office administrator offered us Santa party hats and snacks to keep us distracted. My husband who was in New Jersey, kept saying, “I thought you were having a pap test and had a problem with your ears. What are you doing at the neurologist?”
We were all a bit in shock as the surreal nature of the day continued. With MRI results and party favors in hand, we went back to the neurologist who had waited after hours for our return. He looked at the MRI and said, “ You have MS.”
The doctor asked whether I had ever had any prior events of weakness or numbness. By the time we went through his questions and my answers, a pattern of unexplained, often ignored, yet classic MS symptoms was evident. Previously, when a medical problem would get too bothersome, I would finally make an appointment with a doctor. Inevitably, the symptom went away; I was too busy to keep the appointment before it went away or an explanation emerged, and thus, I canceled the appointment.
I was a typical over-achiever: working, making Christmas decorations by hand, entertaining my husband ’s corporate clients, starting a soup kitchen at our church, and keeping in touch with family each day. Fatigue was apparently due to hard work at law school and around-the-clock hours as a hostile takeover lawyer in the 1980s. Weakness in my right hand was explained as a side effect from writing a law review article and having a lumpectomy. Changes in my vision were thought to be due to long hours and the water in London causing an occasional film on my contact lenses. The inability to walk on my right foot was apparently from falling off a curb, causing a sprain that lasted 6 months.
Other injuries seemingly resulted from general clumsiness, a lack of good depth perception, and so on. Looking back, I am not sure whether it would have mattered if I had been diagnosed earlier. Over the 20 years before my diagnosis (when I had what I now know were MS symptoms), I had completed college in 3 years, married, graduated from law school, practiced and taught law, lived overseas for 10 years, and planned a family; I had lived a “normal” life. In 1996, after 3 months of severe symptoms and with an MRI showing areas of my brain scarred from prior attacks, MS could no longer be ignored and now loomed large.