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After 25 Years, I Still Don't Know What To Expect From My MS

In the harsh glare of the bathroom mirror, I pull down my pajama bottoms and scan my body. According to my rotation, I should be injecting in my left thigh, but it looks thin and almost bluish in the cold light. I know the needle will leave an ugly mark. But my other injection sites still have the red circles that testify that they have been used recently. I wipe my leg with alcohol and push down the plunger, grimacing as I wait for the burn.

For over 20 years I’ve had thrice-weekly dates with a syringe, due to being one of the two million people in the world with multiple sclerosis. Later this year I will mark the 25th anniversary of my MS diagnosis, and I’m still not sure how it will affect my life.

My MS story began in 1994 when, at 46, I woke up one morning stretched and ran my hands down my body only to notice that my belly felt strangely numb. I went to my job as a high school English teacher, but over the next few days the numbness spread upward and downward. My hands became so clumsy that I couldn’t pass out papers. My primary care doctor suspected MS right away. The diagnosis was confirmed by a neurologist with the help of an MRI of the brain, which showed multiple instances of scar tissue (sclerosis).

Some people who receive tough diagnoses struggle with “Why me?” I didn’t. People get terrible diseases. Why should I be exempt from the risk? Besides, the diagnosis made sense of the weird symptoms I had noticed for years. It also explained why, as a seemingly healthy young mother, I had always struggled with fatigue.

At 46, I woke up one morning stretched and ran my hands down my body only to notice that my belly felt strangely numb.

A few weeks after my diagnosis, my numbness receded and disappeared. I was left with mostly benign symptoms. Sometimes when I went to bed at night my body would be a symphony of buzzing and tingling, and sometimes I would wake with exquisitely painful muscle spasms in my legs. My fatigue often left me praying for the moment when I could crawl into my bed.

I also struggled with the uncertainty of not knowing how my disease would affect my life. My children were all adults, but I had recently become a grandmother, and I wanted to be an active grandparent. My husband and I love to travel, but it was stressful scheduling vacations and not knowing if I would be able to go. I felt a little better the first summer after my diagnosis when we were able to vacation in the Blue Ridge Mountains. I studied hiking maps for hours, wondering how much my legs could take. I really wanted to do a waterfall hike, but would the climbing be too much? Would I have to be rescued if I pushed it too far? We went for the waterfall, and my legs held up, but I had a few tense moments.  

Choosing treatment was another dicey proposition. Only a year before my diagnosis, a disease-modifying treatment (DMT) had been approved. My doctor assured me that I was lucky to have the option of this brand-new therapy. But the treatment consisted of injections that caused flu-like symptoms and that could have serious side effects. Somehow I didn’t feel so lucky. Eventually I opted for DMT and learned how to give myself the shots. The side effects weren’t bad as long as I took ibuprofen. If I forgot, the aches would wake me out of a sound sleep.

As the years went by, I wondered about opting for DMT. Maybe the course of my disease would have been mild without the shots. Some nights I simply couldn’t face the needle and pushed back my injection a day. Then there were hours spent on the phone with my insurance company. The treatment was expensive, and the cost went up every year. No way could we afford it if the insurance company denied coverage.

Still, 20 years in, I felt lucky. I didn’t need a cane. I took no medication except for my injections.

Still, 20 years in, I felt lucky. I didn’t need a cane. I took no medication except for my injections. The handful of other MSers I knew struggled with multiple symptoms, including vision problems and bladder control, as well as mobility issues. They juggled medications and frequently had to switch as one course of treatment stopped working. I was one of the lucky ones, I assumed. Then MS tapped me on the shoulder again, three years ago when I was 68 years old.

It was a particularly stressful time. My daughter had been diagnosed with cancer. Our whole family was reeling, and I was helping with my daughter’s three teenagers. One morning I was preparing to drive my grandsons to school when I discovered that I couldn’t lift my left leg enough to get it into the car.

Over the next day or two my whole body became so tight and stiff that getting out of bed was a struggle. It was my first major MS exacerbation, and it was a doozy. I turned down the suggested steroid treatment because my daughter was scheduled for surgery. I ended up fighting the stiffness -– technically called spasticity –- for about six months before it gradually went away. But I would no longer feel sure about the course of my disease.  

I should have known better than to get complacent. MS is a progressive disease, which means that it gets worse over time. In fact, the form of MS I have, which is called relapsing-remitting, or RRMS, usually progresses to a more serious form, called secondary progressive, or SPMS. Traditionally, doctors have expected this change to occur within 25 years for around 90 percent of their patients. That’s another reason my 25th anniversary will be especially poignant, because I’m still classified as RRMS. No one knows whether my treatment is responsible or whether I’ve just been lucky.

I should have known better than to get complacent. MS is a progressive disease, which means that it gets worse over time.

There is still no cure for MS, according to medical experts. A few MS patients have claimed success with alternative treatments and lifestyle changes. Since symptoms can come and go seemingly at random, it’s hard to say whether a particular strategy works. I think taking care of my overall health and prioritizing working out and staying active has improved the quality of my life with MS, but it has not been a cure.

These days I mostly wake up with a smile on my face. My daughter’s cancer treatment is going well. We’ve had a couple of outstanding vacations with our kids and grandkids, one to Costa Rica and one to the Pacific Northwest. On our last trip I tried a waterfall hike that did prove to be too much for me. But I made it most of the way up and rejoined my family when they started back down. I’m hitting the gym a little harder so that next time I can go all the way.

In the meantime, I try not to worry. I don’t fear dying from MS, as it is rarely fatal. I don’t stress about my family members getting MS, as it is not a directly inherited disease. I do worry about being a burden on my family, but that is a concern of most older individuals, with or without MS. My husband and I plan for the future, but we plan vacations and celebrations, not long-term care. We have saved for our old age, but we hope to put it off a little longer.

As I reflect on my upcoming anniversary, I know that my future is a mystery, as is everyone’s. I don’t know what setbacks or even tragedies may lie ahead. But I do know that it is entirely possible to live life with joy, even with MS as a companion.        

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