MOTHER & HER DAUGHTER BOTH HAVE MS! HERE'S HER "insider’s perspective on multiple sclerosis"

 Most people who have MS are diagnosed between the ages of 20 and 50, although people as young as 2 and as old as 75 have been known to be diagnosed. In my case, when I first began experiencing symptoms that caught my attention (numbness), I thought I had a pinched nerve in my back. I was in my 20s at the time. Subsequent doctor visits and testing (EMG) revealed nothing and the symptoms went away. Over the years, many other symptoms appeared, then subsided (relapsing-remitting). I noticed these changes but convinced myself they were unimportant. These symptoms included clumsiness and tripping, slurred speech, double vision, balance problems, more numbness, walking into walls, etc.
By the time I had self-determined that the symptoms I was having could possibly be MS-related, I was in my late 40s. The first doctor with whom I discussed my concerns drew blood, did a chest X-ray and gave me a clean bill of health. When I pointed out that he had done no tests that could determine whether or not I had MS, he asked me to walk 5 feet to his office door and back, and once again told me I was fine.

Two months later I experienced a major relapse in the heat and humidity of a Washington, D.C., summer. When I returned to California, I called my doctor and demanded a referral to a neurologist. Before he gave me a referral, he ordered an MRI. A week later the doctor called to tell me that the MRI results showed “.. lesions in the brain indicative of a diagnosis of MS.”

Although I was devastated to hear the news, I was also relieved. I finally knew that I was not imagining things; there was a reason for the symptoms I had been experiencing for so many years. It was time to move on and to figure out what to do next.

When I was in my 20s, not much was understood about MS. When I was finally diagnosed in 1993, there was only one disease-modifying therapy for MS on the market, Betaseron.

Now there are 10 with several more in the pipeline. Although at the time I opted to not begin Betaseron treatment because of concerns about side effects, I wonder now if that was the wisest decision. When I went to the UCLA MS specialty clinic in 1997, I was advised, quite emphatically, to get on treatment. I began treatment with Copaxone in 1997. Because my symptoms continued to slowly progress, I changed to Rebif, one of the interferon drugs, in 2005.

My daughter’s case is somewhat different. Her symptoms (vertigo, optic neuritis) began when she was a teenager, long before I was diagnosed. At the time, MS was not discussed. Her symptoms progressed and she received her diagnosis of MS in 2003, at the age of 29.

For both of us, MS is, and continues to be, a challenge. However, ironically, the challenges have been  fulfilling for me. I was able to continue working and retire on schedule, although during the last few years of my career I navigated my work environment on a scooter.

My daughter has progressed to the point where she cannot walk for any distance, so she navigates her  daily world on a scooter. But for her, life is good. She has married, has had two beautiful children and is making plans to continue her education by entering a doctoral program when the boys are in school.

My point in describing these personal experiences is to point out that things have changed. Medical progress has been amazing. Although there is still no cure, things can be done to slow progression and/or alleviate symptoms. But, we must all take ownership of our health.

Labels: Betaseron, Rebif