About 16 years ago when my daughter was 7 months old, I turned around to watch her crawling, and noticed I had double vision. As a physician, I came up with all sorts of diagnoses. MS was on the list, but not high up. At the hospital where I worked, I had testing done. An MRI showed some brain lesions that suggested MS, but the diagnosis wasn’t definitive. Six months later, I had another episode, tingling in my pinky finger. Another MRI confirmed more brain lesions, and I was diagnosed with relapsing-remitting MS. I was 30 years old with a new baby, a new job, and a new home.
Within the early years after diagnosis, I had more relapses. One time I felt tingling, as if my socks were too tight. When it didn’t go away, I called my neurologist and had an MRI, which showed new lesions. I’ve never been hospitalized, and Dr.’s Lathi and Katz have been very vigilant about adjusting my medications whenever there has been any sign of trouble, so that’s probably helped prevent more serious relapses. We’ve also worked together to find medications that fit my lifestyle.
I think of MS like a veil that covers everything I experience, like the fatigue that comes with it. There’s no guarantee that—even if you rest—you’re going to be able to do things. I have a lot of heat sensitivity, and exercise can raise the body temperature. Years ago, doctors advised against overheating with exercise, but in more recent years, exercise, with appropriate management, is encouraged for those of us with MS. My new job is going to the gym. I have a fan that I put in front of my recumbent bicycle. I get funny looks, but it works. Last year, I did a 30-mile MS bike ride around New York City. That’s not something I would have been able to do pre-MS, and ironically, it’s because I’ve built up the ability and endurance to do it!
Medications have been very helpful in slowing physical disability. People can’t see the fatigue or cognitive changes I experience—things like planning, multitasking, or even cooking are challenges for me. I’ve also been lucky enough to have a wife who’s been able to lean in as I’ve leaned out with work. From my experience, I’ve also learned that it’s important to start treatment as soon as possible after an MS diagnosis. My advice is to be vocal about your needs and your symptoms and talk to your doctor to find a medication that’s right for you and your lifestyle.
Here are some of the things that I’ve found helpful. TRY ALTERNATIVE PATHS and ways of doing things! When reading books became difficult because of attention issues, I felt like I had to give up something I enjoyed. Then I heard about audiobooks. Now I do both—read and listen—which is a huge life-changer. JOIN A SUPPORT GROUP or find other sources of support! I’ve embraced support groups and learned tips and tricks from other people who have MS. It’s also nice to be social and see other people and find out how they’re doing. MAKE LISTS! I used to be able to juggle multiple things in my head. Now I can’t do so unless I write things down. Ask plenty of questions and be a good advocate for yourself! Be a partner with your physician and health care team.