Please bear in mind when reading this, it’s purely in relation to my experience and what I’ve read of the experience others have had in relation to their MS.
I guess you could say I was lucky with when I was diagnosed with MS, being diagnosed nowadays is infinitely preferable to being diagnosed 20 or even 10 years ago. There are so many treatment options available to each of us, and being a bit of a war mongering fighter because I’d had so many relapses in such a short time I chose to take the fight to MS before rather than later.
To recap, my status before treatment was as follows
- Cog-fog - My head felt like there was soup in it, remembering things like what I’d watched on the TV, the book I was in the progress of reading, conversations I’d had or was in the middle of having were hard or impossible to keep up with
- Constant Foot drop Mostly in my left foot which I had to watch with pretty much every step I took to make sure it was doing what it was supposed to be doing
- Spaghetti leg This is my name for 'whole leg drop' - the extreme of foot drop that had me in a wheelchair coming back from Milan in April
- Tiredness This one’s a bit contentious as I have NEVER allowed MS to stop me from doing things (except I didn’t go to the Good Food Show at the NEC last year because I couldn’t face that I would have to do it in a mobility scooter). I regard Fatigue as an extreme where the exhaustion stops you in your tracks makes going on impossible to achieve not just bloody hard, so I called what I had tiredness even if it did make me quite narcoleptic – I could fall asleep any time any place anywhere – Martini narcolepsy :-)
- Bathroom Urgency - And oh boy it's not nice to hear that screaming claxon in my head yelling 'Go NOW you're about to embarrass yourself'
- Optic Neuritis My eyes have always been pretty rubbish – my good eye prescription is 7.75 nd the bad one 10.75 with a 1.5 astigmatism on top of that. The pain in my eyes and loss of the ability to see anything in detail (like words on a page) terrified me in a way not much else could. My eyes might have been dreadful, but I could drive, read and live normally the thought of losing that was horrific to me
- Lack of balance I couldn’t balance with my eyes open or closed, I toppling sideways and needing railings to hang on to.
- Sensation loss - The ONLY parts of me that actually had skin sensation was my right arm and from my boobs to the top of my head. I had no skin sensation there, but I did have electric shock / worms under the skin sensation inside whenever my skin made contact with anything, walking was like having scrunchy cotton wool under me feet, between my toes it was horrid. Acupuncture with electrical stimulus made it really clear how far the sensation loss had gone to my left side, it didn’t matter if it was turned up so I cried at the power on the right my left simply didn’t feel anything (imagine a Tens machine on full blast and how much that really hurts – to have that and feel nothing is very scary – and quite frankly for your sex life it’s really shitty)
- ‘I’ve had my first treatment but I’m relapsing – damned if I ‘m going to do the second’ – what the actual hell? This is a 2 part treatment over 2 years - That’s like getting off a train half way to your destination and then whining because ‘you’re not there yet’
- My Neuro / doctor says I’ only have ‘Mild MS’ - sorry that’s like saying ‘You’re a little bit pregnant’ whether your MS is distinctly aggressive and debilitating or persistent and annoying it’s causing scarring in your brain and / or spine which at any time can be one relapse away from horrendous disability – I found a marvellous article which explains lesions and brain atrophy which can be accessed here : http://www.medhelp.org/posts/Multiple-Sclerosis/MRIs--Lesions---Symptoms/show/288712 - I have posted the detail of this with a picture that will scare the heck out of you in the post before this one.
- I’m waiting for Lemtrada to ‘do it’s thing’ within 4 weeks lemtrada and all those pesky T & B cells are flushed from your body. At that point you’re reliant on your own body to undertake some repairs while it’s not under attack. The quality and efficiency of those repairs I suspect are going to be pretty much equivalent to how you maintain the marvellous machine that is your body – treat it badly don’t give it the right fuel and environment, do a little work on it to get it in shape, and it’s going to be like a neglected old banger – temperamental, unreliable and possibly rotting away on your driveway or in the garage from neglect.
My thinking is hit hard, hit fast take control and don’t wait until MS intrudes into your life more than you’re prepared to accept – fight back put the MonSter away and live :-)