My Zebra

At the age of 34 I had a relatively unremarkable medical history. Typical childhood diseases, mono as a teenager in university, normal checkups at my yearly physicals. So when I went to my doctor in January of '98 with gradual weakening on my right side, I figured I had a pinched nerve in my neck and told my doc that. She conducted a neuro exam and said she wanted me to see a neurologist. She'd get back to me, but if it got worse, I was to come see her again. In the meantime she sent me for an x-ray of my neck, as a pinched nerved or something out of sorts in my neck was still a possibility.

I had the x-ray the next day but the day after that I was worse. Back to the doc I went and she sent me straight to the hospital where I was diagnosed with probable MS at the end of the day. Time from onset of symptoms to diagnosis was 6 days.

My mother is politically active, behind the scenes. So over the years people have commented to her that I probably got my quick diagnosis because of her connections. She denied it, as she had nothing to do with it, and explains that I was very lucky.

I didn't have a thick medical file to begin with, no other major or chronic illnesses, no exposure to dangerous chemicals or the like at my job, and I had an excellent rapport with my doctor. I went to see her once a year for my physical and that was pretty much it.

A couple of years ago, I was facilitating a talk given by one of the neurologists about treatments of MS. One of the questions from the audience was "Why does it take so long for some people to get a diagnosis?"

In a nutshell, a few things are at work. First, presentation. We all know (or we should know) that each individual symptom in and of itself could indicate any number of things wrong. Vertigo? Inner ear infection. Tingling in your arm? You slept on it funny or it's a pinched nerve.

Second, our medical history may have nothing in it to indicate a predisposition to neurological events. No one in my family had MS.

Third, our medical history may be jam-packed with other chronic illnesses such as allergies, cancer, chronic infections, diabetes. Other illnesses are likely to be investigated first, before MS, as you have a history of them. Doctors are taught that "when you hear hoof beats, look for the horse, not the zebra". MS is a zebra. I had only horses in my medical history.

Fourth, cost and eliminating the obvious. Working up a lab for an inner ear infection is going to cost a lot less than an MRI for a tumour or MS. If the lab comes up negative, ear infection can be eliminated from the list of differentials.

Fifth, our own ignorance. How many times, pre-MS, have we attributed our symptoms to other benign illnesses? If we have a couple of days of vertigo we think we must have a flu or inner ear infection and it goes away. Tingling in our arm? We slept on it funny and after a couple of days it goes away. And those symptoms may have been days, weeks, or even months or years apart. So do we associate one with the other? Nope. It's not until reflection after diagnosis that we can recall symptoms that may have been indicators of MS. I recalled being at the movies a few months before my diagnosis and experiencing tingling in the fingertips of my right hand. That symptom lasted a couple of days, then went away, forgotten until two years after my diagnosis when I was thinking about any possible symptoms I had long before my diagnosis.

A study was released this week that indicated that people who were obese, smoked, or had other physical or mental health conditions took one to 10 years longer to be diagnosed with MS than those without those conditions. The more medical problems someone with MS had, the more severe the disease became by the time they were diagnosed.

The results of the study are not surprising. What is interesting, though, is the level of disability reached for those whose diagnosis was delayed. One could hypothesize that early diagnosis and early treatment might delay disability, which is the point of the disease modifying drugs.

The lessons to be learned from all this info? Take responsibility for your own health care. That means eat right, sleep right, and exercise; take care of your body, know your body. Learn what you can about any other conditions you may have. Develop a good relationship with your doctor.

Once you are diagnosed with MS, you still have continued responsibility for your own health care. Not all symptoms are MS related. We still get the flu, cancer, arthritis, or Parkinson's. Just because you are the proud owner of a zebra, there's still the potential for a herd of horses to be hanging around.