Thursday 19 November 2015

Thoughts on when to fight back against MS

I’ve posted this before in the blog, but it’s buried somewhere in the deep dark past, I thought it was probably worth posting my thoughts on the subject again for new readers.
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)
None of these things individually or collectively made me consider myself as ‘disabled’ as the leg collapsing and sight problems came and went with annoying regularity. Apart from the MS stuff I considered myself to be in good health (that might have been a bit delusional on my part – Doctors and Neurologists told me to stop playing things down that for me might have been intensely annoying, but for someone else might have been catastrophic for their life and lifestyle)
I guess what I’m taking a long time to get round to saying is that I really wasn’t ‘That’ buggered when I started Lemtrada, yes I did and still do a lot of proactive self support things like the Oxygen Therapy, the vitamins and minerals, I still slosh down 3 litres of water every day and I probably always will.
Overall my Lemtrada treatment went as expected, the Steroids gave me the raging munchies, made it hard to sleep at night, and that awful moon faced glow, the anti-histamine made me sleepy (they give the super drowsy kind by IV – damn that stuff is effective) and Lemtrada – well apart from binding onto those pesky T and B cells and exploding them didn’t really affect me at all apart from the pesky rash and the itchies for a couple of weeks.
I did have some fluctuations in my BP whilst being infused, but mostly that was stress related especially when they had to change the cannula, I HATE being poked with a needle with a passion and in the weeks leading up to the treatment I’d had some real ‘stab and hope’ experiences where they’d blown the vein or took sometimes nearly a dozen attempts to actually get the needle in the vein so I was naturally a bit anxious.
I’ve read many stories of people who have a MUCH worse time with the treatment but in every case their start point has been much worse than mine was. Diagnosed for years rather than months, disability scores high and dependence upon walking aids or mobility scooters, unable to work because either they can no longer perform their role or are basically ‘unemployable’ as a result of their MS and their perceived reliability to perform a role.
The further along, the more severe the MS damage, the combination of the treatment protocol seems to have a far higher intrusion into their lives, fatigue, strength, spasticity (I REALLY HATE that word) all seem to be much prevalent the further along people are at the time of treatment. I suspect that expectations set by people like me probably make these people want to punch us smug gits in the face (when they can get the energy too – sorry a poor joke and rather bad taste I know :-( ….)
I guess we all plan for the worst and hope for the best, somewhere in between is acceptable too. The point of Lemtrada is to wipe out those cells literally ‘eating’ our myelin, scarring our brains and spines – to give us a ceasefire in hostilities within our own bodies. Like turning your computer off and on again sometimes the annoying thing goes away for a long time, sometimes it doesn’t happen again, and sometimes once it’s fully rebooted there it damn well is again. That’s why this treatment comes in 2 parts and if the annoying thing (MS) resurfaces again well then we have another treatment and put MS back in its box for another year.
Things I’ve read that have made me as mad as hell in the last few months:
  • ‘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 : - 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 improvements since treatment are the almost complete reversal of my symptoms, I still tire easily, but I can combat that with being a lazy mare :-) (okay so that is an excuse – but it’s my excuse and I’m sticking to it) At the start stopping this awful illness dead in its tracks was my primary goal. I’ve said many times, I’ll do this every year for the rest of my life if that’s what it takes to keep the MonSter in it’s box.

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 :-)

If you’ve had MS for a LONG time, if it’s intrusive and disruptive to your life then this may not be the bed of roses I describe, but the end goal remains the same, stop the progression look after the machine, allow the machine to do what it does best recover – it’s just going to take a while xxx

I’m sorry I sound preachy and downright harsh, and as I say I’m not a medical professional I’m just an MS’er bumbling along the road of this treatment and hoping that something I write is useful to someone else in a similar situation. If it gives hope and strength then I wish you enough to win your battles. If I make you mad, I’m sorry (unless you’re mad for good reasons – then you’re welcome)

Most of all thanks for bearing with me xxxx

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