Vicki shares her multiple sclerosis story, encouraging others to take an active role in their health care. Speak up. Ask questions. Seek support.
Like many people, my first symptoms were subtle and sporadic. They started in the late 1990’s. First there was tingling in my arm when the cold air hit it, then numbness in my leg which I noticed when I went swimming and couldn’t feel the coolness of the water. I brushed off those symptoms to being tired and stressed. Then the foot drop started. I’d go jogging and half-way through, my ankle would tire and I’d sometimes trip. Around that same time my sciatica was acting up and my doctor ordered an MRI on my lower back. The diagnosis was spinal stenosis, which he said was causing my foot drop. I accepted that diagnosis, taking medication and getting cortisone shots all while cutting my runs short and resting when needed.
Then everything changed when I switched to a new primary care doctor in 2004. I had numbness on my right abdomen at the time and told her my history of numbness, tingling and foot drop. She put the pieces together (thank goodness) and sent me to a neurologist who ordered an MRI and that’s when I was diagnosed with MS.
As my MS has progressed over the years, I’ve needed to use more assistive devices. I have an ankle foot orthosis (AFO) for my foot drop, used a cane for a while, and now use a rollator full time. My shower has a bench and a grab bar, I have rails for my toilet and on my couch to make standing up easier, and I’ve had my car modified with a knob on the steering wheel and a left foot accelerator (one of the best things I did).
Thinking about my MS journey so far, I wish I had been a stronger health advocate for myself. It’s easier to maintain the status quo, right? I recently joined an amazing MS Group and mentioned wanting more integrated care. I’d been thinking about it for a while but switching neurologists seemed overwhelming – records transferred, prescriptions updated, medical history discussed yet again, and getting to know a new doctor. But with the encouragement of the group and their high recommendations for The Elliot Lewis Center and Dr. Joshua Katz, I made the switch and I’m so glad I did. Everyone at the center has been great and I felt comfortable with Dr. Katz right away. In the short time I’ve seen him, I’ve learned so much about my stage of MS, the latest treatments, general MS care, and more. He set me up with a social worker, an in-home physical therapist and a physical therapist who is an MS Certified Specialist, Jean Feder-Ewell. Jean has enlightened me on how my MS affects my mobility and is giving me exercises to hopefully prevent it from getting worse and maybe even get some of it back – fingers crossed!
So, no more status-quo for me… it’s full steam ahead. I have a dedicated and caring health care team, support from family and friends, and a can-do attitude. If you’re not taking an active role in your healthcare, I encourage you to do so. Speak up, ask questions, seek support, and explore other options if your health care needs are not being met. It took a while for me to do it, but it’s really made a positive difference and hopefully will do the same for you.