Valentine’s Day marks 23 years with multiple sclerosis

Valentine’s Day marks 23 years with multiple sclerosis

At the age of 49 I’ve lived almost half my life with the disease. It was the weekend of Valentine’s Day when I was moving into my new home that my left foot started to go numb. Within 4 days it was all the way up the entire side of my body. Within 6 days I was at a neurologist who was asking my mom and I if anyone in my family had MS. Having actually had optic neuritis about 6 months before and not having any diagnosis to go with that, I at least had an MRI. The MRI was used for a comparison to the emergency MRI performed 7 days after Valentine’s Day and I was diagnosed with multiple sclerosis. 6 months ago during that optic neuritis experience I had a lesion on the NRI that the doctor never even informed me about. Truthfully one by itself doesn’t always mean anything but it should have still been brought to my attention. The MRI done 6 months later had numerous lesion. It was how my diagnosis was so easily made.

23 years ago there was so little that was known about MS still. There were only 2 disease modifying drugs, Avonex and Betaseron. The attack or relapse in Valentine’s Day that started this was very severe and very quick. My neurologist put me on Avonex immediately. I was terrified of needles and now I had to give myself an intramuscular shot every week. We’d have to check to make sure we were in the muscle before pressing down on the needle. I can still remember how that sensation felt. It was tough and I didn’t last very long with Avonex. I switched to Betaseron which was at least subconscious.

12 years I took Betaseron. I had moments where I tried rebif for a bit even copsxone but it was Betaseron for the majority of those years. I hated those shots. I hated needles. I had so many places on my body that were just sore from being infusion sites. I was always bruised, red or tender. I had so many nights I’d wake up with chills or some other side effect. It didn’t matter that I was on the drug for so long, I’d still have the side effects. I couldn’t wait to switch to Gilyenia, the oral drug, when it came out. I don’t even think I cared if it was as good as Betaseron or not. I was done with shots. That was a very happy day for me. I remember thinking I finally got through the worst of it. Who knew!!!!

Wow that was so long ago. I think I finally made that switch to Gilenya in 2011. Ten years ago. Since then there’s been Tysabri, Rituxan, Ocrevus and back to Rituxan. Unfortunately I kept having relapses every 6 months so my medicine got stronger. I haven’t had a relapse now since about 2014 however my multiple sclerosis has not been stable either. I have continued to decline ever since despite the drugs. I would say that I’m positive that I would be A LOT worse without then. I think my MS was severe right out of the gate and I was lucky that Avonex and Betaseron were already available. Five years earlier they weren’t. I continue to exercise everyday, eat well and do my infusion every 6 months. I try to stay infusion on anything new coming out with drugs or research regarding secondary MS. I talk to my doctor and I am a major component of my healthcare decision. Mostly I try to be positive, attitude is everything After 23 years of doing this the one thing I’ve definitely learned is you have to keep your head on straight. You can’t fight this disease without accepting your diagnosis. Then you do everything you can to keep yourself strong both physically and mentally. MS is a diagnosis not a definition.

2 thoughts on “Valentine’s Day marks 23 years with multiple sclerosis

  1. Good read as always. I am not far behind you with 20 years living with MS. Excepting that one has MS is key in moving forward in life with and in keeping a positive attitude. I refer to my MS as a condition not a disease. A disease is something one catches something that can be transmitted. Looking at it as a condition helps me keep everything in focus.

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