Danielle Spinks-Earl

My Story

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. Pictures of my brain were clipped to a lightbox on the wall. The grey brain matter of my brain was covered in what looked like white fingerprints. It was typical of Relapsing-Remitting Multiple Sclerosis, my neurologist said. “Textbook case.”

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.

Since my diagnosis, I’ve been in hospital five 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 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.

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 through diet, lifestyle and a self-injectable with a cute name I take once a month (Kespimpta). I have surrendered to the MS establishment and am following instructions for the first time. It’s the path of least resistance. And I’m doing just fine on my drug and my Food Medicine Diet for MS. I suspect I am doing well mostly because of the diet, but it doesn’t matter.

sitting at fortress 12 Great Wall of China
You can buy a T-shirt if you get this far. Fortress 12. Great Wall of China, March 2019

I’m not saying that I have cured my MS, or that I have even stopped it. All I am saying is that I have never felt better.  I wish someone had told me this 20 years ago, because it would have made such a big difference to my mental health and my entire approach to life.

If you have MS, my purpose is to show people with MS that a positive future lies ahead. You’re not alone. There is evidence to support what I have done.

Living without multiple sclerosis is possible. Your quality of life, symptoms, and the course of your disease can all be controlled if not massively improved through your lifestyle.

 I want to share what and how I have done it so you can too.

Be well.

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