The symptoms for MS are many and varied and just because you tick some or even all the boxes, it may be something else. If you do tick every box on this list, I suggest you consult a doctor because you are certainly on the totally stuffed end of something serious.
Early symptoms for MS are often slight and go away without need for attention. Pretty much the same as anyone who has had the odd back twinge, a bout of feeling tired or perhaps a stumble on a gutter.
I’ll tick each symptom I’ve experienced below – and some of them may or not be part of MS. That’s why it is important that MS sufferers have regular general medical checkups. The MS won’t kill you, but something eventually will and better to push whatever that may be down the time chart.
As an example of mistaken symptoms, I did think I had MS vision problems as the computer screen was getting blurry and I lost interest in reading (especially small print). Turns out I just needed reading glasses, like most people my age. Every eye test showed no ill-effect from MS.
I took most of these bullet points from an MS website and have made my comments in brackets or following each section. There may be others – let me know!
- blurring of vision
- double vision (the techo term is Diplopia, which could also be small African dictatorship)
- optic neuritis
- involuntary rapid eye movement
- total loss of sight (this is very rare, but can also come and go)
Balance & co-ordination problems
- loss of balance (yep, I’ll lean towards ticking that one, especially getting on and off boats!)
- tremor (yep, occasionally)
- unstable walking (the techo term is Ataxia, and I thought she was a heroine in a Star Wars movie!)
- vertigo – (Yep, I’ve had a bit of that – also possibly a bit of agoraphobia – must check if that could be an MS symptom!)
- clumsiness of a limb (tick)
- lack of co-ordination (ditto)
- weakness: particularly affect the legs and walking
Yes – but I loooove my canes! In the first week of having a cane, which is a nice carved wooden number picked up in Vanuatu, it was given the name ‘Nemo’ because we were always trying to find it. Nemo now lives on a hook near the back door. The second cane (a stylish silver and black collapsible one), I have dubbed ‘Amex’ because I don’t leave home without it.
- altered muscle tone can and muscle stiffness can affect mobility and walking
Yep. A bit. I guess. But I don’t like the word ‘spastic’ (see below). I like to paint (canvases, not walls) but recently I found that holding a brush for a couple of hours turned my hand into a claw. Handwriting can also take a turn towards the illegible. Fortunately, so far, I haven’t noticed that I have any trouble with my tpying… typinig… typing.
- ‘pins and needles’
- burning sensations
Not really. Don’t we all get the occasional ‘pins & needles’?
- muscle pains
- facial pain (the techo term is Neuralgia, which I thought was a fondness for the past)
- stabbing sharp pains
- burning tingling pain
Pain is a pretty subjective thing. One person’s toothache may be another person’s pleasure. My measure of ‘pain’ is something that requires a ‘painkiller’ so it’s rare – but occasionally I get a dull pain in the back of the neck and shoulders.
- slowing of speech
- slurring of words
- changes in rhythm of speech
- difficulty in swallowing (the techo term is Dysphagia, which sounds appropriately disgusting)
- excessive salivating
This one I’m keeping in the closet. Yes, I have noticed some very occasional slurring (even while sober!) but I think I have got away with it to date. Maybe it’s a bit like Basil Fawlty in the ‘Germans’ episode. “I mentioned the war once, but I think I got away with it”. I’ll update this bit if someone appears and starts wiping my chin.
- A debilitating kind of general fatigue which is unpredictable or out of proportion to the activity. Fatigue is one of the most common (and one of the most troubling) symptoms of MS.
Well, I certainly have this, but am currently ‘fighting’ it. A short daytime nap would probably help – after all, a lot of sensible countries have ‘siesta’ time – apparently we all get a tad tired in the afternoons anyway and not necessarily because we are bored at work. I do find that I am going to bed earlier but also waking earlier, which is not necessarily a bad thing as it helps coping with what pops up in the next section. The fatigue caused by walking too far or lifting/carrying things is definitely way out of proportion to the energy expended. A lot of MS sufferers also experience insomnia, and a bad night’s sleep doesn’t do anyone good.
Bladder & bowel problems
- Bladder problems include the need to pass water frequently and/or urgently, incomplete emptying or emptying at inappropriate times.
- Bowel problems include constipation and, infrequently, loss of bowel control.
- Need to urinate during the night (the techo term is Nocturia. I thought ‘Nocturia’ was the name of one of the witches from Macbeth. Maybe they have something in common, as both involve a bit of “toil and trouble”).
Gosh, we’re getting into personal territory here! Oh well… It’s pretty much fact that people with MS know the location of every public toilet in town. Up until now, however, the only person I have embarrassed is myself and I hope that continues. Part of the ‘control’ is prevention – if you pass a bathroom, you think about using it.
And it’s a weird thing, having the sudden urge to empty your bladder when it is nowhere near full. And occasionally you have an urge but it passes (so to speak) and it may be several hours until the urge comes again.
Sometimes the old sphincter refuses to tighten, resulting in an extended period trying to ‘finish’. Nursie Mel said a ‘cough’ can help with this and my good lady, Annie, nodded in agreement. That might be a female thing as it doesn’t work for me. Applying pressure at the upper thighs, either side of the scrotum, does work for me but female readers will find that bit of info superfluous.
Yes, constipation can happen, as can diarrhoea (which is a word I always have trouble spelling). Curiously these two conditions can occasionally combine.
As for the need for night urination, this only happens around 4:00am or 5:00am and that’s probably been happening way before the MS appeared. It could be because I don’t have a routine of taking a slash before bedtime and it could be that I’m waking up anyway so it’s simply time to get up. Birdsong usually wakes me, which is why I wish Queensland would adopt daylight saving. Having to urinate at 4:00am or 5:00am each morning will only concern me if I start sleeping through till 6:00am.
Sexuality & intimacy
- diminished arousal
- loss of sensation
Oh dear! It just gets worse!!
I will comment in more detail in the section titled ‘The Bedroom’, which incidentally is rated NFMC (Not For My Children). In a nutshell, yes to all three. But they do have little blue pills these days.
Sensitivity to heat
- this symptom very commonly causes a transient worsening of symptoms
I have noticed that heat/humidity affects me quite a bit. I travel to Vanuatu a few times each year and that’s where I really noticed the symptoms worsening (August 2010). Again, in December 2010, just after diagnosis, things worsened as soon as I got off the plane in Port Vila – so much so the first thing I did was go to the chemist and buy a cane. It helped enormously. When I mentioned this to Dr Noel at my first consultation (after the August trip) he confirmed that it can happen with MS. I mentioned that a move to Tasmania could be on the cards. He suggested a little further south. Taking cooler showers can also help.
Cognitive & emotional disturbances
- loss of short term memory
- loss of concentration, judgement or reasoning
Loss of short-term memory – absolutely! Loss of short-term memory – absolutely! Sorry… Things like people’s names can disappear into the ether. I have a good friend who is a pretty famous artist. Recently I could not think of her name despite going through the alphabet a couple of times. I had to go to a painting on the lounge room wall to check the signature (sorry Helen!). On Australia Day I saw a fabulous movie, True Grit, starring Jeff Bridges. For the life of me I still can’t recall the name of the terrific actress who is nominated for Best Supporting actress – but I can remember Kim Darby who played that role in the 1969 version. I can even remember that Jeff’s father, Lloyd, had a supporting role in the 1952 western, High Noon. You can find yourself in a room not remembering why you initially went there (bathrooms excluded). Making lists and having a diary can assist. Now, where did I put my glasses?
Loss of concentration (and loss of focus) does happen. For me, I find I can only stay on one task at a time. Yes, yes, I know, men can’t multi-task BUT it has become more noticeable. A couple of examples – if watching Sunrise and I read the scrolling text, the vision/audio doesn’t come through at all (and vice versa). If typing an email and someone asks me a question, I usually have to ask them to repeat it – and once the question is understood and answered, I will have forgotten where I was up to in the email. As for loss of judgement or reasoning – I’ll have to ask others about that! I think whenever anyone makes a judgement call, they think they are right at the time, no matter what the consequences. My most recent bit of reasoning was that this blog would be a good idea.
Depression? That’s a tough one. Apparently depression can be caused by MS itself, or by the realisation that you have MS, which are totally different things. And depression occurs in lots and lots of people who don’t have MS, so a person with MS who also has depression may have still got it without the MS. There are symptoms for depression like fatigue and loss of appetite, but they could also be symptoms of MS. I guess I might need a tap on the shoulder for this one as I feel as though I’m coping okay. Things that depress me are more along the lines of people ignoring climate change, lack of political leadership, the life-expectancy of indigenous Australians or finding that some thoughtless bastard has parked in the disabled spot. Sorry, but dashboard sticker spotting is just another side effect of MS.
And what was that other thing I had to remember?
Ah yes, Spasticity. It comes from the Greek spastikos, to mean ‘drawing in’ or ‘tugging’, which is what happens to the hands or feet. I know it is a legitimate medical term but when I was growing up it was a derogatory term, not just for people with cerebral palsy but for anyone obviously inept or stupid. As children we would even throw ‘spaz-attacks’ to amuse ourselves and each other. It was also a word deemed offensive in Britain. In the United States, however, it seems to be a part of slang language that sits just fine. In an episode of Friends, Jennifer Anniston’s character referred to herself as a ‘laundry spaz’ because she had trouble doing the washing… Bill Murray’s character in Meatballs was called ‘Spaz’… and after losing a US Masters, Tiger Woods told the world that he was hitting the ball well but “as soon as I got to the green I was a spaz”.
In the late 1970’s I was a fan of Ian Dury & the Blockheads (Sex & Drugs & Rock & Roll and Hit Me With Your Rhythm Stick). Ian was disabled (childhood polio) and, in 1981, he put out a song that was banned by the BBC, called Spasticus Autisticus as a protest against that year being designated ‘International Year of the Disabled’. Ian thought it patronizing and counter-productive. I tend to agree. People are people. There’s a difference between raising awareness and money for a cause like MS or cancer research and pigeon-holing people into a ‘sub-class’. The chorus in the song, “I’m Spasticus Autisticus” was inspired by the scene in the movie Spartacus, when the gladiators are ordered to identify their leader, and all of them answer, “I’m Spartacus” in total solidarity. There are some fairly strong lyrics as well – for example, “So place your hard-earned peanuts in my tin and thank the Creator you’re not in the state I’m in.” Not that there’s anything wrong with Queensland.
Speaking of childhood polio, there was an autobiography hanging about in our house when I was growing up by Alan Marshall called I Can Jump Puddles (made into a mini-series in 1981). We have a Maltese Poodle who has a habit of hanging about my feet. I was thinking of giving this blog the title, I Can’t Jump Poodles and you can probably understand why I thought better of it.
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