Questions You Really Want to Ask About MS

Patient Expert

Shortly after being diagnosed with multiple sclerosis, I realized I hated the disease. Yes, I know it is not nice to hate anything, but MS could handle it. After all, this disease was a source of emotional pain and fear in the beginning, and really, has never become much different in the 14 years since my diagnosis.

And while I hate MS, I have always liked my neurologist. Right away this doctor became an important and trusted person in my life. There wasn’t a question that I could not ask him. I always attended my check-ups with a list of at least eight questions, and he always answered them. I wondered about symptoms, medication, physical therapy, and my future, and I realized he wanted to give me answers. This is the kind of neurologist people living with this disease should have: a doctor with the knowledge and understanding that could make living with MS easier.

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As I said, I could ask him anything and he’d give me an honest and educated answer. That was what I relied on. I may not have always liked the answers he gave me, but I always knew they were his honest truths.

Five years after my diagnosis when my health and walking started to become more unstable, I began asking about a treatment that my neurologist didn’t really want to discuss. The first time I asked about Novantrone, a low-level chemotherapy drug, he skirted around the idea of using it, choosing instead to prescribe a different treatment option.

I tried the method of treatment he and I agreed on, but I didn’t get much better. Again I asked about Novantrone, and I got an answer I never expected.

“Jennifer, I am not comfortable prescribing that drug,” he said. “I don’t have any patients taking it, and I’m not sure about the long-term effects of using it.”

I understood his uncertainty because it was a newer medication used to treat more advanced forms of MS like mine, but I had read about it and felt informed and aware of the drug’s risks and potential benefits. Deep down, I knew this drug was my best option.

And that’s when my neurologist told me that he would not prescribe that drug, saying instead he would refer me to an MS specialty clinic that had more experience using it to treat patients. I have never regretted my choice to change my neurologist because Novantrone did help stabilize my MS.

I will always appreciate the honesty of my former neurologist. I learned that the questions you ask may not always get the answers you’d expect, but a good neurologist always answers them.