Multiple Sclerosis Isn’t My Thing

Selfie of me. I’ve had MS since 1998.
Selfie of me. I’ve had MS since 1998.
Author Photo

name is Danielle. I’m 44 years old. I have had multiple sclerosis (MS) since 1998.

MS is an autoimmune disease. The name is a description of the symptoms: ‘hardening of the tissue’ or multiple scars. The causes are not yet understood and there is no known cure.

When an episode of multiple sclerosis occurs, something triggers an immune response from the central nervous system. For reasons not well understood, the target of that immune response is myelin, which is the fatty insulation that surrounds our nerves to protect them. The effect of the scarred myelin is known as de-myelination. It can lead to all sorts of strange and varied symptoms and interrupt the transmission of signals from the brain to parts of our body.

At first, it felt like pins and needles. They were in tight bands around my chest, and my legs. The symptoms faded over several months but never entirely went away. I had an MRI scan. It showed demyelination. Nothing was diagnosed.

A couple of years later, an episode of optic neuritis left me close to blind for two weeks. I had an MRI scan. The first one wasn’t too bad.

The neurologist’s office, pictures of my brain were clipped to a lightbox on the wall. They were covered in what looked like white fingerprints. I was a bit disappointed. Not because I could see anything wrong, just that I thought it meant someone had dipped their hands in the chemicals, and I wasn't keen to do it all over again.

They weren’t fingerprints. It was typical of Relapsing-Remitting Multiple Sclerosis, my neurologist said. “Textbook case.”

Brain scan MRI with fingerprints
Brain scan MRI with fingerprints
MRI scan from Bioimaging, Royal North Shore Hospital

Since my diagnosis, I’ve been in hospital four times with severe attacks requiring high doses of intravenous prednisone (a corticosteroid) to calm the inflammation.

There have been so many random acts of disability I’ve lost count.

Paralysis on one side of my body a few times. Vertigo (urgh! Like being on a yacht in rough weather for days). Blindness (fortunately not for too long). Difficulty walking (often). Loss of taste and smell (once). Burning sensations. Pins and needles (I could write a volume on that). Tightness, weakness, balance problems. Whenever I tipped my head forward, I would get a buzzing in my hands and fingers. I’ve also had a disability permit for my car. And been very worried about my future.

Initially, I had decided not to take any of the disease-modifying drugs because I thought there were not enough benefits to warrant the side effects.

After about 12 years, the course of the disease seemed to change. My attacks became more severe and more frequent, so I began a relatively new drugs glatiramer acetate (brand name Copaxone). I took this for 18 months but had so many attacks during this time, I eventually decided to stop.

Along my journey, I have talked to different people with MS. I searched for different things to try, drugs, acupuncture, anything.

MS is a harrowing disease. It’s completely unpredictable in terms of what’s going to happen to you. And it’s isolating. Nobody else can truly understand what it’s like to be in your skin. The pain is not only physical but existential. Every time you have an attack, you don’t know if you’re going to get better or worse.

Today, I now manage my ms entirely through diet and lifestyle.

Specifically, I have adopted a vegan diet with seafood. I’ve quit dairy, and added meditation, and plenty of exercise. Especially running and walking through the bush.

Good news for the newbies

If you have recently been diagnosed, I want to tell you that life ahead can be great. There is much joy ahead.

You may not believe me yet, but there are as many benefits that fall out of this horrible illness. I’m dedicating part of every week to share how to piece this puzzle together. We’re in it together.

Hi there :) I have had MS since 1998 and is now symptom-free. I share how I live the best life with multiple sclerosis on bestlifewithms.com You can subscribe to my email for updates. Be well.

Originally published at https://bestlifewithms.com on July 7, 2020.

Freelance writer. Composer of short fiction. Novelist.

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