Suddenly everyone seems to know someone who has MS that is running marathons or raising tons of kids. It is very reassuring to hear so many success stories. Still, I needed to hear that from an actual person that is living with MS.
Technically I have not yet been diagnosed with multiple sclerosis. One must have more than one episode, i.e. multiple, to be diagnosed. From all that I have read and heard, my symptoms make a strong case.
At night when I should be sleeping is when I allow myself to go down the dirty rabbit hole of online information. Somehow I found Ann Pietrangelo, a real women with multiple sclerosis, surviving triple-negative breast cancer, and continuing to pursue a career as a freelance writer. I ordered her book and within minutes was tweeting with her. Less than twelve hours later, I interviewed her.
Here I had the opportunity to ask many of my questions to Ann.
Q. How old were you when you were diagnosed?
A. Forty-four. I'd been having symptoms for about six months.
Q. What were your initial symptoms?
A. It began with numbness and tingling in one arm. It quickly spread to all four limbs, causing severe weakness. Within a couple of weeks, I was unable to walk.
Q. How long before the initial flare-up went away?
A. The first flare-up lasted about three weeks. Unfortunately, by the time I made it to a neurologist's office, there were no visible symptoms. That situation repeated itself several times before diagnosis. It's a frustration shared by many people who are eventually diagnosed with MS.
Q. Did you ever get back to “normal”?
A. "Normal" is something I had to redefine. I had three or four relapses every year for about seven years, each time feeling a bit worse for wear. After a relapse in the spring of 2010, my MS all but disappeared. By fall of that year, I found out I had triple-negative breast cancer. Through ten months of treatment that included surgery, chemotherapy, and radiation, my MS remained in remission – and is to this day. Why? That's a mystery. But that doesn't mean I'm cured, or that I've forgotten what it feels like to lose control over my body. I'll never feel the kind of "normal" I did before MS came on the scene.
Q. Have you noticed changes with hot and cold?
A. I have had a few bad experiences with heat-induced exacerbations. Thankfully, they only lasted a half hour or so. Other than those few episodes, weather has not been much of an issue with my MS.
Q. How does MS affect your family most?
A. I'd have to say that has to do with healthcare – health insurance specifically. My individual insurance policy premiums, combined with very high deductibles and co-pays, are a real budget-buster. Hanging on to that health insurance is about the biggest stress-inducer there is. Now that I've also had cancer, that pressure is even more intense.
Q. Have you tried any treatment?
A. Soon after diagnosis, I began taking one of the disease-modifying medications. After my triple-negative breast cancer diagnosis, I decided to go off that medication. It's been almost two years, and I'm still in remission from both diseases.
Q. Do you exercise?
A. Lack of exercise is my biggest failure. I walk and occasionally indulge in a little Wii Fit, but I don't exercise enough. I maintain a healthy diet and suitable weight, and don't smoke or otherwise abuse my body.
Q. What has been the biggest challenge of MS?
A. Within the first few years of MS and its relentless relapses, I had to find alternate ways of earning a living and maintaining independence. The challenge was – and is – to prevent MS, or any other disease, from stopping me from living. I appreciate every day and do my best with whatever challenges it brings.
Q. What has been the biggest blessing of MS?
A. I hate to attribute any blessings to a disease. However, through the challenges of living with MS, I learned the fine art of patience. I became acquainted with a part of me that I barely knew existed. We've all got problems, health or otherwise. It's not those problems that define us, but how we deal with them.
To read more from Ann, buy her book No More Secs: Living, Laughing & Loving Despite Multiple Sclerosis here.
Do you have more questions about MS? Please do not be shy to ask them here. I want to talk about this insanely bizarre autoimmune disease. How can we learn and grow if we ignore the elephant in the room?