Showing posts with label MS Diaries. Show all posts
Showing posts with label MS Diaries. Show all posts

Thursday, 2 November 2017

Disease Modifying Drugs (MS Diaries)

Today I am starting treatment for my MS.

I have met with my MS Nurse twice since my diagnosis last month, and after lots of research and reading I was pretty set on which way I'd go when it came to Disease Modifying Drugs (DMDs).

So what are Disease Modifying Drugs?
DMDs work with different parts of the immune system to reduce the inflammation caused by MS to nerve cells in the brain and spinal cord. This helps reduce the number and severity of relapses. 
Source: Multiple Sclerosis Trust
Basically - they're a big thing and it's a big decision.

I settled on Tecfidera, as I feel it would suit my lifestyle well. Plus it's a tablet and not a needle, unlike 75% of other Multiple Sclerosis treatments. And if you know anything about me you'll know I don't like needles.

Tecfidera does come with some side effects, and my nurse gave me a "cheat sheet" of tips and tricks to help reduce them, so we will see how that goes.

One thing I will be doing is tracking everything. So I have bitten the bullet and invested in a dotted notebook, and I am starting a bullet journal to track my dose, when I take it, what I take it with, what side effects I have. Everything.

Wish me luck!



Thursday, 5 October 2017

I have MS (MS Diaries)

So I have MS. Multiple Sclerosis.

What does that mean?

I don't know.

Let's start with the story of my surprise diagnosis.

Last year, part of my face went numb. There was much panic, a CT scan, an MRI (without contrast because I had a panic attack when they came to stick me) and lots blood tests difficultly drawn. Four days after all of the tests I met with my neurologist and it was put down to a lipoma tucked away next to my brain stem pressing against a nerve.

Then came an incidental "Oh look, we found some lesions in a different part of your brain. Probably nothing to worry about, some past inflammation, but we'll keep and eye on them and give you another MRI in six months".

So I didn't really worry until that next MRI. I'd had a small Google of what an MRI scan's capabilities were, and knew that a contrast agent would show up everything better.

I had words with my mum and dragged her along to the scan with me. I told her and the operative and the nurses that I had a huge fear of needles and that they would have to hold me down and not listen as I screamed a blood curdling "NOOOOOO" when it came to stick me. Then I proceeded to traumatise my mum as she helped hold me down so they could stick me.

I don't think any of them realised exactly how petrified of sharp pointy things I am. But we managed and the contrast was injected.

Skip forward another month and I meet with the neurologist. My lipoma is the same, but remember those accidentally discovered lesions..? Well not only were there more of them, but the contrast showed an "active" one. Active? It meant it was actively inflamed at the time for the scan.

And these lesions they'd incidentally found while looking for something else? "Have you heard of MS before? I'm going to sign you off of my care and refer you to a MS neurologist."

And so my MS journey begins...