"But you don't look ill." These words can be incredibly frustrating for people dealing with the invisible symptoms of MS. Ian Daly, who lives with primary progressive MS, shares his story.
I have MS, that’s multiple sclerosis to those of you whose lives haven’t been touched by it. More specifically, and hey let’s be specific, I have primary progressive multiple sclerosis. This means I have symptoms every day, and every night, without any intervals. Hardly seems fair but hey hoe, life goes on eh? That’s my optimism done for the day…
The reason for me once again putting numb fingers to dusty keyboard is that I’d like to go through some of the invisible symptoms of MS with you, curious reader, in an effort to explain why sometimes I look like I’ve lost a tenner and found a green salad.
Pre diagnosis I had pins and needles in one of my fingers. This spread to all of the fingers on one hand and then, bizarrely, to the fingers on the other hand. I also tended to fall over a lot. I visited a neurologist; I won’t dwell on the detail as it has been covered in various other stuff I’ve written, and I was diagnosed with PPMS. Two years later and I still have pins and needles in both hands. It never went away. Don’t think it ever will.
The ‘falling over a lot’ turned out to be drop foot. Another MS favourite where the offending foot refuses to interact in any meaningful way with the brain and hangs there like a deflated balloon. It's not strictly an invisible symptom as it’s there if you look for it. Unfortunately nobody does. Again, this never went away and I have a gorgeous foot splint (with Velcro adjustment no less) for when it gets really bad. It’s not so much of a problem any more, as my right leg (the one connected to my drop foot), pretty much refuses to do anything meaningful. It won’t take any weight and moving it to walk is exhausting. Quite important features for a leg I feel.
My right leg now pretty much refuses to do anything meaningful. It won’t take any weight, quite an important feature for a leg I feel.
My left leg used to be OK. Then about a year ago it decided to join in with the other one and is now playing catch-up. No drop foot this time, just a terrific and highly unpredictable way of disappearing when I least expect it. I know this sounds odd so let me explain. I suspect it's random numbness in my left foot and a portion of my lower leg. I put it down on the floor and I can’t feel it, so it feels like I’ve stepped into a hole. I’ll invariably stumble or fall which causes some amusement and accusations of drinking and enjoying myself.
As well as the numb feet I have numb patches on both legs, my back, parts of my scalp, and my arms. This manifests itself particularly well when taking a shower as I can’t feel the water, or indeed the temperature of the water. I also experience various crawling sensations, particularly on my scalp, down my neck and back, and down my left leg. Up to now it’s not affected the right leg but who knows what’s next? I have a shaved head so thankfully I can see there’s nothing there, but the sensation is unbelievable realistic. My newest, for the moment anyway, symptom is a burning sensation akin to a hot iron being placed on the bottom of my back, you know, right on that funny little tail bone (coccyx I believe it’s called). The pain is always there, varying only as I top up my pain killers every eight hours or so.
Having dealt with most of the constants in my life, let us move on to the more random things.
I sometimes compare my MS to an insidious valet. A malevolent little so and so, seldom seen but always there (I have a lot of time to think and, sometimes, my thoughts run away with me. I won’t hurt anyone. Promise).
‘A knife to the ribs sir?’
‘I’d really rather you didn’t…’
‘Certainly! I’ll stab you twice then I’ll disappear’
‘How about a pin in the end of one of your fingers, a white hot pin if you like. No problem’.
The other night it was a sharp implement, from the base of my right kneecap that felt like it was being dragged down my shin. Thankfully it went as quickly as it arrived but I could have frankly done without it. All pain seems worse at 3 o’clock in the morning.
‘Knitting needle to the eye sir. Certainly.’ The pain only lasts a split second but is excruciating.
I frequently wake feeling like my torso has been beaten with a baseball bat. My ribs feel bruised and breathing is difficult as the pain forces me to only take shallow breaths. My good lady always denies any knowledge of any violence under the cover of darkness so I’m forced to conclude it’s the MS valet (You can see how this could take over can’t you?).
I realise I’m going on a bit. I really do. But that’s kind of the point. This is now my life, and the life of many others. Sitting here quietly reflecting on what to write next I’m reminded of my tinnitus, the constant background high pitched whine in my head that has somehow become the norm. It’s strangely therapeutic when I’m trying to sleep. Focussing on it is cathartic in a way that counting sheep could never be.
Then there’s the aptly named ‘cog fog’. I say aptly named, I suspect it was abbreviated by a sufferer of MS who couldn’t remember the full name. I now forget a word mid-sentence; my good lady fills in the gaps almost without a pause to the conversation. Or she laughs, as I rant at myself for being forgetful.
MS fatigue is a much talked about, and much misunderstood phenomenon. I will confess that prior to my diagnosis I had little sympathy for people who were ‘suffering from exhaustion’. Oh dear god how wrong I was. It’s been described as walking through treacle (who does this?) or carrying heavy weights, or wearing lead boots (again, where do you buy these and why would you?).
My own experience involves waves of sheer undiluted exhaustion coming over me.
To experience this for yourself is a relatively straightforward process. First, stay up for 72 hours straight. If you can, catch a heavy cold, you know the kind that makes every single bone in your body hurt. Do circuit training for a couple of hours, if you can, focus mainly on weights. Take an overdose of muscle relaxant, or ask for just enough general anaesthetic to negate all of your muscles but not quite enough to put you to sleep. Now add in an acute lack of balance and diminished thinking, you can use alcohol for this. Lots of alcohol. Enough to make walking or remaining upright extremely difficult. Add a shot of horse tranquiliser and boom! We’re there. Now, get out of bed, shower, and get dressed. I dare you.
All of the above symptoms are MS related and all are ‘invisible’ to others. This is by no means an exhaustive list. Telling me to ‘cheer up, it might never happen’ when I’m dealing with a burning hot left foot and an ice pick in the base of my spine is not likely to endear you to me. I also do not respond well to ‘you look really well’ or ‘at least you’re not ill’. All have been said to me and I am immensely proud that I, with huge amounts of self-control, have yet to set fire to anybody.
Primary Progressive MS
An introduction to primary progressive multiple sclerosis (PPMS). Learn more about primary progressive MS in this A-Z page.
Altered sensations, such as pins and needles, burning or crawling feelings, numbness or tightness are common in multiple sclerosis. Find out more in this A-Z entry.
Foot drop (dropped foot) is a symptom of MS where the foot doesn't lift properly when walking, causing reduced mobility and risk of falls. Find out more in this A-Z entry.