Symptoms – After a year

One year after Round 1, here is an updated catalogue of all my symptoms as they stand right now. The idea is to understand whether any of my pre-existing symptoms have changed and what if any new symptoms have appeared.

Altered sensation

  • My first attack, in 2015, included trigeminal nerve pain (itching, tingling, extreme sensitivity to touch and temperature) which began on the right side of my face, expanded to cover my scalp and face, neck, shoulder and down my arm to my hand – mainly an odd sensation of being both numb and tingly at the same time, which I have officially dubbed “nubbliness”. This was all clearly demarcated on the right side of my body.
  • The residual symptoms from this attack are constant pins and needles in the whole of my right hand, resulting in loss of strength, co-ordination and dexterity, and some hyper-sensitivity. This has improved a bit from the worst point – I can write and type a little, and just about manage fiddly tasks like doing up buttons and tying shoelaces but have had to give up hand-reliant hobbies (e.g. music & crafts), and still need an annoying amount of help with daily stuff.
  • I also noticed in 2015 that the tips of my left fingers were (and remain) pretty numb although as that was fairly minor compared what was happening to my right hand I didn’t pay it much attention at the time.
  • My second attack, in 2016, included more altered sensation. A few odd patches where new nubbliness broke out – the only significant one being the soles of both feet, which is all that remains of my 2016 attack. But I also had passing shadows of nubbliness in other places – the inside of my right knee being the only “new” symptom location.
  • July 2018 update.
  • The altered sensation in the soles of my feet disappeared not long after Round 1 – hooray!
  • However a new symptom (noticed during Round 1 in fact) is a tingling sensation in my lady parts, bottom and thighs – this comes on after I’ve done a bit too much exercise in one go – not often, but more likely to happen if I am hot and tired.
  • Other symptoms are largely unchanged although I sometimes fancy that my hand problems ease off a little – not significantly though, and maybe I’m just getting more practiced at doing things with a bad hand.

Fatigue

  • The main symptom of the second attack was fatigue. Not such terrible fatigue that I couldn’t go to work, but bad enough that life was not much fun for a few months. I don’t have any measurable remaining fatigue.
  • July 2018 update.
  • Fatigue is something I have realised in the last few months that I have to manage. If I have a few busy and active days (more than 3 in a row!) I tend to collapse with exhaustion and become very tearful and irritable. If I rest as much as possible for a day or two it passes, but it’s better if I try to plan ahead and not overstretch myself.

Cognition

  • This, like fatigue, is a bit of a sneaky one. I first noticed it with my second attack and it seems to come and go. It’s definitely come on a bit stronger with my latest relapse, but it’s hard to be definite about what I am experiencing due to it all being generally a bit vague.
  • Signs I have noticed that something is up – (bearing in mind that pre-MS I was very articulate and only ever struggled with words when under the extreme influence of lovely booze!) – stumbling over words, mixing up words (“hot cross bum, anyone?”), using the wrong word (or name, embarrassingly) or just plain not being able to think of a name or the right word for something. It isn’t constant, but it is frequent enough that I am conscious of having to be careful with my words when having a grown-up conversation with a colleague or any kind of official. This symptom also has a pet name, which is “jubbliness”.
  • July 2018 update.
  • I haven’t noticed this much lately – good news although as it is such a nebulous symptoms it is hard to say anything definite as to whether there is clear improvement.

Walking difficulty

  • My third attack, in 2017, began with a feeling of being off-balance and light-headed. It’s not obvious whether this might have been partly at least caused by the UTI that my MS nurse diagnosed and treated before offering me steroids. However, whether a direct MS symptom or not, it did leave me struggling to walk confidently.
  • I then swiftly developed right-sided drop foot to the point where I was only able to walk with difficulty, using first a stick and then a three-wheeled walker. This has now recovered significantly, I no longer drag my foot along the ground; but walking any distance is still a challenge and my ankle flexion is not good enough (yet?) to allow me to drive safely.
  • As I’ve recovered my walking from drop foot, I’ve noticed a secondary factor which is that my right knee is “weird”. Sometimes it seems to over-straighten or “pop backwards”. It doesn’t feel stable. It has almost given way a couple of times. I haven’t got to the bottom of exactly what’s going on with my knee – maybe it’s due to spasticity in my leg, but maybe not. I’m hoping to get some neuro-physio to help me out with addressing this!
  • I also get hip and groin pain which I suspect is linked to awkward gait due to the foot drop.
  • July 2018 update.
  • I did see that neuro-physio (won’t repeat my posts on that here!) – and have been working daily to improve my strength and fitness. Pilates was very useful with an instructor who recommended some targeted exercises.
  • I’m not 100% but – I can run now (slowly and carefully but still!) and happily cycle and work out at the gym. I can’t remember the last time I had knee trouble (I get general knee pain sometimes, especially if walking downhill, but not that weird over-straightening  hyper extension thing). And no groin pain for ages either, although I do still get achy hips from time to time – usually after lying on my side at night to be fair. I can walk much longer distances without difficulty, as long as I watch for fatigue risks and rest when I need to.

Spasms / spasticity & twitching

  • I get leg twitches – on both sides – these are worse when I’m tired. I have had this on and off since the beginning. They tend to happen more often in the evening or at night. They tend to happen when I am sitting or lying down – often a walk around or a few minutes of careful stretches will calm it down. They definitely got worse with the latest relapse – from an occasional mild annoyance that rarely troubled me significantly (except sometimes in bed at night when twitching stopped me getting to sleep!) to a distressing daytime jerking that drove me properly mad. Fortunately the steroids quickly stopped the worst of it but I do still get frequent little muscle twitches.
  • My right leg will occasionally stiffen out straight. This happens once or twice in the morning before I get up, and very occasionally at other times. It usually lasts only a few seconds, with a brief cramp, not too painful, and then my leg begins to relax again. So far, it’s never caused me any actual trouble so it’s in the “interesting” category rather than the “problem” category!
  • July 2018 update.
  • These leg twitches and spasticity have eased off. I still get twitches when over-tired although I have discovered that getting a bit of gentle exercise helps enormously – twitching happens commonly when I have had a lazy day! The exercise bike for half an hour, or a steady evening walk both work wonders. It rarely keeps me awake at night these days, which is a blessing!
  • The stiff-leg thing only happens sometimes now – not every morning as it used to.

Visual problems

  • July 2018 update.
  • My fourth serious attack, in 2018, led to total blindness in the right eye. It recovered over time although even now, five months later, I still have very poor vision in my right eye. But blessedly I am coping well so it is awkward and tiring rather than seriously disabling. I hope for but am not banking on further improvement.
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