Sunday, 10 February 2019

What does my MS feel like for me?

Mal's Current MS Symptoms

On 23 January 2017, Mal Kiely was diagnosed as having "MS" (Multiple Sclerosis, a disease of the nervous system)

NB. Every single person with MS will experience a different set of symptoms - no two MS-ers are the same!

NB. This post is not a "pity-party/woe-is-me" thing, as I'm simply sharing a very brief insight into some of the reasons as to why I may act so "up-and-down" from time to time. Yes, some days are better than others for me - that's very frustrating for me and others to deal with.

Click: My journey to this point.

My main MS symptoms:
  • Hand Numbness
  • Foot Drop/Walking issues
  • Loss of Balance
  • Fatigue
  • Insomnia
  • Depression
  • Bowel Problems
  • Tinnitus
  • Nausea
My secondary symptoms:
  • Changeable mood
  • The dizzies/Vertigo
  • Brain Fog
  • Brain zaps
  • Slight hand tremors
  • Itchiness
  • Leg twitches

▶◯▶ Try picking-up a wet cake of soap whilst wearing a wet plastic oven-mitt - you get the idea. That's about the best way to describe how my MS is affecting me in my hands.

It's not a loss of muscle strength, grip, or motor skills. It's not painful. It's this strange pins'n'needles/tingling/numbness makes it a weird feeling trying to... pick-up a dropped pen off the floor... pick-up soap in the shower... putting a key in a lock... typing... pointing, scrolling and double-clicking a mouse... doing up shirt buttons... writing... tying shoelaces... pegging washing to a clothesline... sewing (hand and machine... tho I haven't tried, yet!)... turning the pages of a book... getting a pill out of a bottle... picking up a dropped credit card/piece of paper off the floor... wiping my butt (lol)... I have to concentrate when using a sharp knife, like when chopping veggies etc, just ordinary day-to-day things like that. Just general clumsiness (more than normal, that is). I have the sensation of hot and cold (thankfully), but the effects make things feel kinda "slippery" or "spongy" to my touch (it's weird to try to explain it). Medically, it's known as "Paresthesia".
  • Pins and needles
  • Numbness
  • Tingling
  • Buzzing
  • Vibrating
  • Throbbing
  • Slippery
  • Spongy
Vary rarely, I also experience slight hand tremors... and slight leg twitches (when I first lay down to sleep, cf below) - but I've been aware of those for years.

I also occasionally get unexpected spots of itchiness, for no apparent reason.

Playing guitar with MS is a challenge, let's admit it. But I'll soldier on, for as long as I can.

▶◯▶ My MS is also slightly affecting my left foot (about 1 step in 10, my left foot doesn't 'rise' as well as it should)... sometimes, I seem to "roll" as I walk! It's called "foot drop". I'll use a walking stick sometimes now, for a longer walk - "just in case..."

▶◯▶ My sense of balance is a little bit out as well... if I stand still, I will sway very slightly (more than normal, that is!) No, I am not drunk. It's just another of my MS symptoms that I've become more aware of, as is my neurological team too. Now, when I'm standing to play guitar, I have a chair handy, just-in-case... it's the same reason why I'll use a walking stick, during a longer walk - "just in case."

▶◯▶ Sometimes, I feel extremely fatigued... the sort of mental and physical tiredness / weariness / exhaustion that doesn't necessarily go away after a good sleep. This often stops me from participating in life! Not always sleeping well doesn't help, either.

▶◯▶ Imagine being so depressed, that you cannot practically function... that's one of my MS symptoms. In association with my pre-existing Bi-Polar Depression, this often prevents me from participating in life, and in things that would normally bring me joy and pleasure. And - depression is not just "feeling sad"...

▶◯▶ The dizzies / the spins / Vertigo are different again... as are the occasional "brain fogs" and "brain zaps".

▶◯▶ My mood can change at the drop of a hat (more than normal, that is!), plus my bouts of depression seem a little more ramped-up and intense, from time to time. I can't always stop/prevent it, nor always pin-point a 'trigger'.

▶◯▶ MS, in combination with my Ulcerative Colitis, have a negative effect on my ability to be as social as I once was... I have bowel problems.

▶◯▶ Lately, I've realised my Tinnitus (ringing/buzzing in the ears) is much more audibly noticeable some days, especially when I am very tired. Some certain frequencies sometimes actually hurt (and not loud ones!) This is not all due to loud music exposure, either.

▶◯▶ I've noticed a weird random overwhelming sense of nausea occasionally, almost (and sometimes!) to the point of vomiting... but there is no headache or dizziness involved. It's a rare MS symptom, apparently - yay me!

▶◯▶ Random small leg spasms, or "Twitches", are another one of my strange MS symptoms. For me, they feel like momentary tiny pin pricks (like a tiny electric shock/jolt) in my calves and toes, but usually only happen (randomly) when I lay down to try to sleep. The painless sensation make the muscles in my calves involuntarily 'twitch' or jump slightly, and, of course, wake me up! They do not always last for long, but it's annoying when they stop me from falling asleep - which doesn't come as easily as it used to, dagnammit! (More...)

▶◯▶ For me, finding a sense of balance feels harder some days more than others. I'm not talking about balancing life and work priorities - we all deal with those. It's finding a positive balance between all my varied other health issues.

▶◯▶ NOTE: My MS symptoms will randomly come-and-go over my lifetime. It's called "Relapse and Remission". Plus... yes, it SUCKS having to be dependant on medication for the rest of my life.

▶◯▶  MS Lifestyle Considerations
              MS and Heat 

(Originally posted: 25 January 2017):

When I was in hospital for five days (back in early December 2017), I was on high-level steroids (to reduce the auto-immune symptoms), including a "lumbar puncture" (no bloody fun, I assure you!). My symptoms at that time were: My whole right arm, from elbow to hand, was quite numb and useless. It affected me all the up to my elbow (on my right arm), my left hand/fingertips, across my torso-front (chest), the inside of both knees, and the tips of my toes. It even affected the way I walked - the inner-knee numbness made me roll like an old sailor a bit, when I walked - that made me laff!

Thank goodness that now (c. 6 weeks later) I'm only experiencing pins and needles in both my hands. Everything else cleared away, after the steroid treatment.
So now, even typing can be a challenge! Typos are common - like right now, using my laptop (I don't have a smartphone or handheld device) - thank goodness for spellcheckers (which find most of my "dizzy-fingers" typos!)

I am adapting to it reasonably well.

It's all very frustrating, but I'm not depressed or unsettled by it all, to be honest. That surprises me, but I'm fully aware that there are people with this condition who have it a LOT worse off than I ever will!

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Peas be with ewe 


  1. Keep on going the positive way you are well done my friend:)))

  2. Mate feeling for you if I lost my sight the equivalent for me as a photographer as is the loss of control of your hands and guitar playing for you I would be devastated.But things as in the pic you shared could be worse and you dont have cancer so you can still live, I know its hard for you bud but stick in there and fight.Life is precious mate we lost a very good friend recently to cancer aged 48 and when I complain my partner reminds me of this. Ok enough of my blah blah blah heads up bud :)Christopher

  3. It sounds truly horrendous to me, and such an unfair thing to creep into the best parts of your life. I have had friends with MS at various stages, one of whom suddenly went into a wheelchair but whose hands were fine for music and typing. My best friend from school,Jeannie her husband got MS only a few years after they married. He was pretty helpless fairly soon and went into a wheelchair but then he got his legs back and now hikes around with his camera having a great time! He'd be about 67 now, I think, but his forties were a hard gig. I really hope you can find a way to participate in music- like I suggested somewhere else- maybe electronically you can record your stuff in pieces and put it together through the computer and thus play OK. Synthesizers have some very good guitar sounds. Hugs.