Living with Multiple Sclerosis (MS)

In Spring 2022, my dear friend, Becky, was diagnosed with MS. A shock, not least due to a lack of awareness of the disease.

She shares her experience, stating;

"Knowledge is power. If spreading the word makes one person feel less alone, that's a big win in my book!"

Before we get started, what is MS?

Multiple sclerosis (MS) is a condition that affects the brain and spinal cord. In MS, the coating that protects nerves (myelin) is damaged. This causes various symptoms, like blurred vision and problems with movement, thought, and feeling.

You can read more about it here .

What led to your diagnosis??

I woke up one morning in April 2022 with a strange sensation in two fingers on my right hand. In the shower, I realised parts of my back felt numb, too. On one side, the water felt sharp and pin-like but smooth on the other. I called 111 and saw my GP, who ran some tests.?

Over the next few weeks, the numbness began spreading, and eventually, my legs and entire right side were numb. I had two hospital visits for examinations, blood tests, X-rays, a CT scan, MRI, and, worst of all, a lumbar puncture.?

I had to be alone due to COVID restrictions; I remember feeling scared.

Exactly a month after the initial numbness, I was diagnosed with MS. There are a few variations of the condition. I have the most common type, called Relapsing-Remitting Multiple Sclerosis (RRMS), although, over time, this could change to a more advanced type.

For once, being an overthinker worked in my favour! I acknowledged the symptoms and sought advice. This started the ball rolling on getting a diagnosis, and I encourage anyone experiencing symptoms to seek advice immediately.

After diagnosis, what were the next steps with tests and treatment?

Because MS can be progressive and different for each person, you are usually encouraged to take a ‘watch and wait’ approach to see how it behaves and, therefore, how best to tackle it. It's unpredictable, and how the condition presents itself is typically unique to each individual.

I had three MRI scans in the first year to closely monitor what was happening ‘under the surface’. My initial scan showed lesions on my brain and spine, and my second MRI indicated a few more on my brain.?

In February 2023, I began a disease-modifying treatment (DMT), which I self-inject three times a week. I’m not a doctor, but as I understand it, the medication acts as a decoy, tricking my immune system into attacking it rather than my brain and spine. I also opted for a ‘pregnancy-safe’ treatment, of which there are a couple, which eases the pressure of having to make much bigger family decisions for the time being.

There are many different approaches to treating MS - some go down the medical treatment route, while others opt for a more holistic lifestyle approach. As I’m fairly young (ha!) at 35, with a young child, I wanted to take as much control as I could, so the DMT approach aligned well with me and my family.

I’m awaiting the results of my most recent scan, and I'm keeping everything crossed that it’s another stable one. This would indicate that the medication is doing its job effectively and has few side effects, which is the goal.

I have also adopted a bit of a holistic approach, including:

• I’ve been receiving Oxygen treatment. It's thought to promote healing and, therefore, aid the regeneration of the nervous system, helping my body repair and recover.
• I’ve cut back on gluten, dairy, alcohol (although I was never a big drinker) and seed oils - basically anything that can cause inflammation, which fires up my immune system into attack mode.?
• In the early days, I benefited from CBT therapy and counselling. The mental and physical worlds are intimately connected, so I’d advocate trying it if people are undecided.

"With more research enabled by fundraising, I’m optimistic that a cure will be found in my lifetime. This fills me with positivity and a determination to keep pushing on, spreading awareness, and raising those vital funds that will eventually get us there!"

What have been the biggest surprises/learnings/life adjustments?

• MS isn’t a life sentence - you can still live a very full life, even if you are heavily afflicted. I see this at the Oxygen Centre; some have had MS for 20+ years and still have a real vitality and zest for life. It has been incredibly humbling and inspiring.

• 20 years ago, there were no treatment options or any drugs at all for MS, which means people were often given a very different prognosis compared to now.

• MS is completely different for everyone. It’s aggravated by inflammation, so managing stress, diet, sleep, and wellness is key.

• Mental health is extremely important when processing a diagnosis. Learn to vocalise your feelings. Slow down, listen to your body, and be kind to yourself. You’ve got to keep your head up and keep moving forward.

• It was surprising to see how others around me dealt with my diagnosis. It affects those around you more than you realise! I think it's so important to be strong, but equally, everyone needs to have a good old cry about these things sometimes - feel all the feels!

• Mindset is everything. It’s been funny to look back at how I felt when I was told and how I am today. Time is a healer, and okay, maybe you can’t stop the MS, but you can do so many things to help you be the best, healthiest version of yourself in all other aspects.

How can people help?

First and foremost, fundraising for groundbreaking research is massive. For example, the MS Society is funding an unprecedented clinical trial called the Octopus , a brand-new approach to drug trials. It’s in the early stages and, if successful, could potentially overhaul clinical trials across medicine.

Raising awareness is also vital. Familiarise yourself with the symptoms , and don’t discard anything minor. You matter, and early intervention can be the secret to staying well.

"Ask the questions, have the conversations and lean in - it's more powerful than you think!"

DISCLAIMER

Neither Becky nor I are medical professionals. This post brings to life Becky’s personal experience with MS. If anyone reading this is in a similar position, please do your research and due diligence on your particular case.?