My Multiple Sclerosis is Getting Worse

by Dawn Lewis

I was diagnosed with Multiple Sclerosis (MS) eight years ago. That’s my diagnosis date but not the onset of the disease. I don’t know when the onset was.

When I was a child we lived on a farm. I think it was one of the better experiences I had. That was back when I liked cats, and we had A LOT! The morning milking of the cow was ours, the second milking the cats. I remember hanging out in the hayloft with kittens all around me. I can remember laying on my side in the hay playing with a cat when one kitten walked up the side of my leg, it hurt. Now as a kid what you experience feels normal so you don’t tell anyone. I mean who’d believe a tiny kitten can hurt your legs. I don’t know if this was the onset of MS or Fibromyalgia in my life. My Mom would poo-poo all the pain to “growing pains”. I’m still having them and God only knows I don’t want to be growing.

Multiple Sclerosis is a disease of the central nervous system (CNS). All the nerves in your CNS are coated in a fatty substance called myelin. Myelin insulates the nervous system’s “wires”, like the coating on an electrical cord. MS attacks the myelin in the CNS. The damage can cause such symptoms as muscle weakness, numbness, tingling, itching, and also cause vision problems. I’ve had all these symptoms and more. The pain and optic neuritis (a lesion on my left optic nerve) sent me to my first Neurologist. I went through a lot of testing including tests for Lyme’s disease and many others. My first MRI did show I had a lesion on my optic nerve and several small lesions in my brain. I wanted to get a second opinion, and I did. The next Neurologist said the MS diagnosis was iffy, so more testing, even a spinal tap. He wasn’t convinced so, onto my third and current Neurologist. He confirmed the MS diagnosis along with his colleague. I’ve been on three different MS disease-modifying drugs, my current one, so far, has been working well for me. This medicine is from a specialty pharmacy, I can’t go to Walgreen’s and pick it up. It’s very expensive and I thank God the manufacturer has given me a very low deductible. I’m saved over $20,000 for three months. Actually, if I didn’t have that discount I’d never take the drugs.

multiple sclerosis in brain

My MS, like everyone else’s MS, is different. That damage of the myelin can be anywhere in the CNS. I don’t have any lesions in my spinal cord, they are all located in my brain.

MS is a progressive disease, it never gets better, it only gets worse. No one knows the cause of MS. There is no cure for MS. The disease-modifying drugs may slow down exacerbations. An exacerbation is the worsening of the disease, maybe a temporary worsening or permanent damage. I have pseudo-exacerbations which are temporary worsening of my symptoms, or new ones, which get better after a few days. Some triggers for me are high heat, stress, cold, and exercise of any form, like cleaning. Air conditioning blowing on me hurts, yeah, it’s nuts.

My daily woes are pain, mostly in the lower back and legs; heat intolerance, and cold intolerant. I stumble through life and look like a drunk. I literally bump into most door jambs, walls, refrigerators, and stoves. I have brain fog. I can’t remember words and have to describe things I mean. I can’t remember things I’ve memorized, like the 23rd Psalm. I can’t remember names but I’ll always remember your face, weird. I’ll start a conversation and then forget where I was headed with the thought. Yeah, I know, you have that too…try ALL THE TIME.

MS is a progressive disease. I’ll leave it there.