As someone who has had MS for 36 years, (diagnosed 35 years ago), I offer my experience hoping it might be helpful to people with more recent diagnoses. When I first found out that I had MS, I read up about the disease. I'd barely heard of it. I knew what might be coming.
For the first 18 years where I only had brief 2 week relapses every 2 years, I was extremely grateful. But I never thought that I could "beat it". When I began to have extreme fatigue and difficulty walking, I wasn't surprised or shocked. I had no control over the disease, but at least I wanted control over my mental health. Not wringing my hands and accepting possible reality helped me face the future calmly.
In 2000, my neurologist suggested that I give Novantrone a try for my fatigue. After 8 months of receiving the injection once every 3 months, my fatigue became manageable. I stayed on it for 3½ years (longer would have hurt my heart) and the fatigue hasn't returned.
I AM PREPARED THAT THE FATIGUE MIGHT RETURN AT ANY TIME.
Again, I won't be shocked. I can no longer drive. I am what is called "wheelchair bound". But I use a scooter, go to the library, scooter to the neighborhood coffee shop for lunch with friends, and ride to the river to read a book. Adult refugee students come to my home for English-as-a-Second-Language lessons.
I don't fool myself that this plateau will last forever, but until the fatigue returns or other dastardly MS symptoms arise, I say, "Enjoy your life. If you don't who will?"
Acceptance and moving forward has worked for me.
Best of luck to all of us!
Have a story for Faces of NARCOMS? Email MSRegistry@narcoms.org
NARCOMS Now Note: Not all medications will work the same for everyone, please consult your physician about how to treat your symptoms.