My MS Story (Part 9)

Today, I have woken up feeling the best that I have in a good few weeks, possibly even months. The things that particularly aggravate me daily, aren’t there. My head is clear and doesn’t feel like it’s stuck in an airless vacuum. I feel more awake and alert (surprising since I got less than six hours sleep last night). I feel present. The usual tingling in my leg has been at a real minimum all day.

My last blog post, as I said at the time, was not one I ever planned to write. This one here is the next part of my story. I got a lot from writing my last post though, and it definitely cleared my head. I was even able to find my “Why Me?” just a day later, which is a story I may share another time.

Two days after I had been in hospital and been told that I might have MS, Dave and I flew out to Athens for our holiday. That meant that I had two solid weeks, away from reality to come to terms with what I was facing.

I’m not going to lie – I spent close to the first three or four days flinging myself about crying. If Dave was asleep, I’d spend the time googling, trying to understand what MS actually is. This would set me off on a totally new wave of worry and hysteria and on a number of times during that holiday, Dave woke up to find me in floods of tears.

I just had so many questions. Was I going to be in a wheelchair? What happens next? Is there a chance that it’s something else that’s far less serious? What even is MS?

I learned very quickly, that forums were not my friend. They were helpful for about five minutes, but once you start trawling through posts, it gets really tough to read. It’s full of negativity and people discussing their struggles. It frightened the life out of me. The thing is, people only turn to a forum when they feel rubbish. They don’t do it when they feel good do they? No – when they are symptom free and feeling good, they’re out there, enjoying life.

I discovered a couple of apps too. One was called MS Buddy (remember the name of this. I’ve got a brilliant story to tell you about it some time). I liked the look of this one – it paired you up with someone who had the same type of MS as you. It also kept sending me these fab notifications for news stories about medicine progression. The only snag was, that I couldn’t actually read the articles as I wasn’t signed up to it yet. In order to sign up, you needed to have a diagnosis of MS.

Like the forums though, by and large, these apps were unhelpful.

I found reputable sources in the form of the NHS website along with the MS Society, MS Trust and MS-UK sites though, and I learned so much. What I write next is by no means the medical dictionary answer. There’s a possibility that parts may not even be quite accurate, but this is MS as I understand it…

MS is a neurological condition which affects your brain and spinal cord. The “insulation” that protects your nerves (myelin) gets damaged because your immune system mistakes myelin for a foreign body and just attacks it. Your body can repair that which is great, but it leaves behind scarring, lesions or signs of inflammation on your brain and spinal cord, and you may not recover 100%.

About 100,000 people in the UK have MS, so I’m certainly not in a tiny minority. About two-thirds of sufferers are female. People tend to get diagnosed in their early twenties, up to late thirties, but you can be diagnosed at any age. Nobody knows what the cause is, and there’s no cure.

There’s a number of different types of MS. Relapsing Remitting (which I have, along with roughly 85% of people with MS) is where you have obvious attacks of symptoms, where everything gets more severe than it usually is for a few weeks. Quite often, you’ll see new symptoms in these “episodes”. The good news is that with relapsing remitting MS, you can take medication, called a disease modifying therapy (DMT). It stops the relapses and prevents progression, or worsening of symptoms.

Progressive MS takes two forms, primary and secondary. In primary progressive, right from the start of developing the illness, symptoms just gradually worsen, without respite. Secondary progressive occurs when someone with relapsing remitting is no longer recovering between episodes as the nerve damage has gotten so bad.

There’s also progressive relapsing MS, where symptoms slowly worsen, but in additioin, there are attacks, or episodes along with gradual deterioration.

MS affects everybody that suffers with it in a different way. You can get symptoms in any part of your body. This means that if you know someone else who has MS, my experience is likely to be quite different, but there’s some things that are pretty common for all.

This great diagram shows what percentage of people with MS experience each symptom

Through researching, I learned that the optic neuritis I’d experienced is one of the obvious early symptoms of MS. I wouldn’t say it was an early one for me, but it was certainly the “concrete evidence” needed to go through with making a diagnosis. Neurological symptoms such as tingling, are perceived to be a bit vague, so doesn’t tend to lead to being tested for MS.

As I looked down the list of symptoms that I’d found, the whole previous six years fell into place like a jigsaw puzzle. I knew in my heart at that point that I would eventually be diagnosed with MS. I couldn’t see how it could be much else. They were all there:

  • Balance, walking and dizziness
  • Bladder/Bowel problems
  • Eyes and Sight
  • Fatigue
  • Loss of control of limbs
  • Memory
  • Spasms and Stiffness
  • Speech

Things that I’d not even tried to explain away and just thought were normal, were even coming up. I get this weird cramp and stiffness in my left leg from time to time, which often leads to my knee buckling. I imagine I look like one of those toys that I had as a kid. You know the ones – you pushed up the base and their legs gave way, and then as soon as you released the base, they would stand up normally again. I never really read too much into these. That happens to everyone. Right? (Wrong!)

Untitled image (1)

I googled “conditions misdiagnosed as MS” as well during this period of time, and although there were things that were similar to the symptoms I had, they just didn’t feel right.

After four days on an emotional rollercoaster, I had learned as much as I possibly could about MS. I resolved that I couldn’t ignore the fact that the ophthalmologist had pointed out “abnormalities on my brain” (yes I know what you’re thinking. I’ve heard that joke 100 times!)

I’d be naive to think that this was all something of nothing.

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