I recently shared a post on social media about a new prescription I was starting. It turns out a lot of people had never heard of it before. If not for my physical therapists, I would not know it existed either.

It was first mentioned to me around May of 2021, about three months after my multiple sclerosis diagnosis. At the time, I was still cycling and hiking on a regular basis. I was also still able to run. However, the activities I loved so much were becoming more and more difficult. The things I did to destress and relax were slowly becoming a source of sadness and anxiety. I asked my primary care physician to refer me to physical therapy.

I loved Dana. She was a neurological physical therapist. Her clientele consisted mainly of people with MS and Parkinson’s. She was kind and patient. More importantly, she was determined to keep me doing the things I loved so desperately. She was the first person to mention Ampyra to me.

She called it the walking drug for MS. In her words, it did wonders in helping people retain or regain their mobility. However, she said, it only works for a small percentage of people who try it and there is a large risk of seizure. I was intrigued enough to write down the name and do some internet research.

I was too skeptical to speak with my neurologist about it. While my MS was worsening, I was still able to walk, work, and ride a bike. Given the small chance of the drug actually working and the risk of seizure, I did not feel it was worth it. To be sure, the risk of seizure is not astronomical while on this drug. For me, though, it was frightening because I live alone. Unless I seized at work or in a public place, I would be completely by myself when it happened. There was also the thought of not being able to drive a car. Having a seizure means not being able to legally operate a motor vehicle for six months to a year. Again, living alone and not having someone to chaperone me to the grocery store or to work would be a major life-altering annoyance.

At the time it was mentioned to me, I was also in the throes of worsening anxiety and a downward spiral of depression. I did not give Ampyra any more consideration. I also stopped physical therapy because, so shortly after my diagnosis, I was lost in waves of hopelessness. Exercise was not going to help me and magic little walking pills do not exist.

Eventually, I pulled myself together enough mentally to try again. Nearly two years after my first round of physical therapy, I was asking for another referral. The difference was this time I was no longer hiking, cycling, or running. I struggled at work and walking any distance longer than a mile was simply dangerous. My body was scarred from multiple falls. I wanted help in any form I could get it.

Unfortunately, Dana left due to her own health issues. Fortunately, I found Kristen, another neuro PT who asked me if I was taking Ampyra within five minutes of meeting her. I told her it had been brought up before, but due to side effects, I was slightly apprehensive. She looked puzzled. She was completely unaware of anyone on the medication who had any issues with it. She said it either worked, or it did not. She told me the neurologist that she receives most of her referrals from prescribes it to every MS patient he sees. She had not heard of anyone having a seizure, or any other ill effects.

I reconsidered my research. Magically, Google no longer warned of seizures as a main side effect of Ampyra. As long as you made sure to take each pill twelve hours apart, the risk was pretty minimal actually. Most likely there was no magic involved at all and my initial searches had simply been biased. In my hopelessness, I actively searched for and found the negatives. In my depression, I sought what would keep me in that state of sadness. Ampyra actually sounded like a great idea now. I spoke with my neurologist. He was onboard and said it was worth a shot and prescribed a three-month trial of the drug.

Ampyra is not meant to treat MS or slow the progression of the disease. It is only intended to improve how a person with MS walks. It is not a disease-modifying therapy. Ampyra is not meant to replace any MS medications, but to work alongside them.

The drug works by assisting electric signals to move better along nerve fibers by blocking potassium channels. Here is a brief overview of how it functions

I started Ampyra last week. It can take four to six weeks for the medication to become effective if it works at all. Side effects I have experienced so far include loss of appetite (not actually listed as a side effect) and nausea. Ginger tea did the trick at easing my tummy. I have also had insomnia. I easily sleep eight to nine hours a night. I have only clocked about five hours a night since starting Ampyra. I also have difficulty focusing. It is not brain fog, but more physical. As in, my eyes have trouble honing in on something. Typing this has involved looking away every few words to refocus them. I was told that the side effects are temporary and will subside as the body becomes accustomed to the medicine. So far, they are only a mild nuisance.

Ampyra is touted as the walking drug, but lots of people have reported other benefits, as well. As I just mentioned, it takes time to know if you are going to be one of the lucky few that Ampyra works for. It is too soon for me to comment as to whether I will be one of them. I can say that our dog walks have gotten slightly longer. It is hard to say if that is the drug working or just wishful thinking. Time will tell. I will update you soon!

Cover Photo: https://abilitymagazine.com/ms-drug-ampyra-a-new-gait-for-independence/