This is my experience and my story. This medication may not work in the same way for you, but then again, maybe it will. I wish that my story gives you a reason to be hopeful.
To say I was skeptical to start aminopyradine (a generic form of what is commonly known as Ampyra) would be an understatement. My skepticism was based on the realities that:
1. I've lived with Multiple Sclerosis for nearly 14 years.
2. I've tried a laundry list of medications, from four disease-modifying drugs to many different ones used for symptom management - some worked and some didn't.
3. I have secondary-progressive MS, which seems neglected in terms of new treatment options.
My neurologist explained that this medication is a potassium channel blocker that may aid in the conduction of electrical impulses in demyelinated nerves. She set my expectations that the drug works for about 50 percent of those who take it and that it has very few side effects.
"Either it works for you or it doesn't, but I believe it's worth trying," she said.
I trust her medical advice, and thought to myself, "Give it a shot, Jen."
It has been exactly a week since I've started aminopyradine. Here are some of my first thoughts, impressions and experiences.
When the compounded generic form arrived at my door, the prescription was mailed to Jennifer Bigmann. Not Jennifer Digmann. Was that an omen or a sign?
Gosh, I hope not.
I quickly called the pharmacy, made sure they corrected the misspelling, grabbed a full glass of water, and swallowed my first pill.
A few hours after taking that first dose, I was able to raise my left arm almost completely over my head, which I haven't been able to do for the last couple years. Placebo effect I wondered, still skeptical.
The next morning, I was still raising my arm and in addition to that, my left hand was flat. Not balled-up in a fist, like the position it was most commonly found in.
Plus, I got a good night of sleep, no restless waking because of my uncomfortable nighttime plastic hand splint. Perhaps I was being cocky, but I didn't wear it that night. I wanted to test my medications effectiveness. Thankfully, I woke up with a flat hand in spite of my cockiness.
All of these changes seemed strange, almost too good to be true, but I'd take them and show them off, which I did that morning in physical therapy.
"Is this due to my P.T. or could it be the medicine?" I asked my therapist, who I had started seeing about one week earlier.
"Not sure. Just be happy and work with it," she replied.
So I did, and that night I promised myself that I would not take these improvements for granted.
The next day, I was able to complete a few heal slides and a set of 10 modified push-ups. Even folded some bath towels, and cut up my own chicken breast at dinner.
Amazing! I thought.
But in reality, I still cannot walk or coordinate my hands and arms enough to put my hair up in a ponytail.
Yet I'm thrilled with regaining any functional ability I've lost since being diagnosed with Multiple Sclerosis. I have what I consider to be reasonable expectations and goals for myself. I savor my small accomplishments, and this has restored my faith that medical science has not forgotten about us "older cases" of MS.
Sometimes I still can't believe it, but then I prove that I'm not dreaming when I pinch myself with my now-functioning left hand.
Published On: May 27, 2011