Tuesday, 3 January 2023

What does my MS feel like for me?


Mal's Current MS Symptoms

▶▶ On 23 January 2017 (aged 53), Mal Kiely was diagnosed as having "MS" (Multiple Sclerosis, a disease of the nervous system).

▶▶ My MS symptoms will randomly come and go in severity over my lifetime, but they will not get 'better'. It's called "Relapse and Remission" (RRMS).

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


💥 NOTE. 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.



▶▶ I had a visit with neurologist Dr Julia Thompson (in January 2017, age 53), and was diagnosed with Multiple Sclerosis "Relapsing-remitting (RRMS)".

▶▶ After my latest MRI (June 2022, aged 57), I have no active brain lesions (Sclerosis/scarring) in my brain, and none of them has changed since my last MRI 5 years ago - the best result possible! My current Neurologist (Dr Leo Davies) was thinking of putting me on Gilenya, but he agrees that, after this latest result, there is no need.

💥 I am one of the rare MSers who does NOT experience any PAIN with my condition, for which I am extremely grateful.
💥 I am on NO medication (DMT) for my MS.
💥 I use a mobility walker/walking stick for mobility/balance issues.



MS won't necessarily affect the length of my life, but it will affect aspects of the quality of my life. Most of my symptoms are 'invisible', which makes it very difficult for people to realise how this affects me from minute to minute.

💥 NOTE: There is no cure for MS.... yet...



My Main MS Symptoms
  • Hand Numbness
  • Foot Drop/Walking issues
  • Leg Weakness
  • Loss of Balance
  • Bowel Problems
  • Fatigue
  • Insomnia
  • Memory and Speech Fade-Outs
  • Depression
  • The dizzies/Vertigo
  • Tinnitus/Hearing hyper-sensitivity
  • Overheating
  • Nausea
My secondary MS symptoms:
  • Changeable mood
  • Leg twitches
  • Foot cramps
  • Slight hand tremors
  • Itchiness
  • Brain zaps
  • Shortness of breath
  • Bruising


Symptoms and Effects

➽ Hand Numbness ("Paresthesia")
Try picking up a wet cake of soap whilst wearing a wet plastic oven-mitt… that is about the best way to describe how MS affects my hands.

It's not a loss of muscle strength, grip, or motor skills. It's not painful. It's a strange pins and needles/tingling/numbness/buzzing/vibrating/throbbing/slippery/spongy effect that makes it very difficult trying to: type, point, scroll and double-click a computer mouse; write by hand; picking up a dropped pen off the floor; use the buttons on an Android-style mobile phone; picking up soap in the shower; putting a key in a lock; doing up shirt buttons; tying shoelaces; pegging washing to a clothesline; sewing; 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 backside (for example). I have to concentrate when using a sharp knife when chopping veggies etc - just ordinary day-to-day things like that. It’s a general clumsiness (more than normal, that is), especially when it is so easy to ‘forget’ after a lifetime lived without these bizarre sensations. I have the sensation of hot and cold (thankfully), but the effect makes things feel "slippery" or "spongy" to my touch (it's weird to try to explain it). I've had to stop playing the guitar completely now (which I used to do professionally).

It's hard to explain the feeling of...
  • Pins and needles
  • Numbness
  • Tingling
  • Buzzing
  • Vibrating
  • Throbbing
  • Slippery
  • Spongy


I have some Mobility Issues, including:

➽ Foot Drop: My MS also affects my left foot - it does not rise as it should, which makes me appear to 'roll' a bit when I walk. It feels like walking through thick mud with one foot continually getting stuck. Combined with my Balance issues [qv.], this affects how long I am able to stand for a given period, without falling over. I'm using a walking stick and walker, to help address my Foot Drop and Balance issues [qv.], so I do not fall over when I walk/move.


In combination with:

➽ My sense of balance is out as well... if I stand still, I will sway very slightly - no, I am not drunk. I have to sit down to do anything. Combined with my Foot Drop [qv.], this affects how long I am able to stand/walk/move effectively for a given period. I'm using a walking stick and walker to help address my Foot Drop and Balance issues [qv.], so I do not fall over when I walk/move.

➽ Leg Weakness: My legs are very weak, meaning I can't walk very far, without feeling quite exhausted. Hence using a walking stick or walker so I don't fall over. Standing for extended periods or walking a fair distance is simply exhausting. Having the seat on my Walker is extremely helpful for immediate situations. Running/climbing are a large problem – I am unable to climb a 2-step ladder, for example.


➽ Bowel ProblemsMS, in combination with my Ulcerative Colitis, negatively affect my ability to be as socially interactive as I once was... I have bowel problems, the urgency and unexpectedness of which necessitate my needing close access to a toilet at all times... plus it's not something that is 'socially acceptable' to discuss at all with many people.

➽ Fatigue: I can often feel extremely fatigued... the sort of mental and physical tiredness/weariness/exhaustion that doesn't necessarily go away after a good sleep. This reduces my ability to concentrate and often prevents me from participating in active living activities, due to physical and mental exhaustion.
It's doesn't happen all the time, but randomly enough to be frustrating for me.

➽ Insomnia: MS affects my ability to sleep effectively and restfully. Only being able to sleep three hours at a time reduces my ability to concentrate [qv. Fatigue, Speech and Memory Issues].

➽ MS affects my memory and speech; "Brain Fades... Brain Fog" is how they're described... fuzzy fade-outs, like walking thru a thick fog out of nowhere; a thought can just... fade away mid-thought, mid-sentence. I have to quickly apologise and say, "Just give me a second... stupid MS!" No, I'm not stupid - but it does make me feel like an idiot, sometimes. My ability to retain information (ie. study), and competently participate in my passion for creative writing and music composing and recording are severely restricted as a consequence.
Again - it happens randomly, and not all the time.

➽ Depression: 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 being able to concentrate, focus and fully participate in work and social activities, and in enjoying/appreciating things that would normally bring me joy and pleasure. Depression is not just "feeling sad".
Note: this is a lot better under control lately and does not happen as often as it used to, nor all the time, thankfully.

➽ MS Vertigo (the dizzies / the spins) make me feel as though the room is spinning around me - I have to sit down immediately; I have to be careful not to fall over, as this awful experience can occur very randomly and unexpectedly.

➽ Hypersensitivity to sounds ("Hyperacusis"): Loud ambient sounds (such as a crowded shopping centre) seem unnaturally amplified and disconcerting, which can be very distracting and disconcerting, making listening and focussing to a particular conversation very difficult. In contrast, certain frequencies (often low/almost inaudible sounds, ie. the motor of the fridge running; the neighbour's vacuum) seem very distinct.
Again - it happens randomly, and not all the time.

➽ MS Tinnitus: (ringing/buzzing in the ears; it sounds like cicadas singing) is much more audibly noticeable, especially when I am very tired [qv. Fatigue]. Some certain frequencies sometimes physically hurt (and not loud ones). This is not all due to loud music exposure, either. It often prevents me from hearing and focusing on conversations clearly.

➽ Overheating/Low Heat Tolerance: If I get overheated, I'm useless. Australian summers can be my undoing, so I have to prepare when a hot day is coming. When I am overheated, I can be so affected that I am unable to move at all (apart from lying flat on the floor in front of a fan/air conditioner wearing wet clothes), and most of my MS symptoms are extremely amplified, rendering me quite productively useless. For example, performing guitar at an event in a hot room makes my hands wholly incapable of playing at all.

➽ MS Nausea: I often experience an overwhelming sense of nausea, almost (and sometimes) to the point of vomiting; but there may be no headache or dizziness involved. This prevents me from social adjusting in some situations and is extremely humiliating and embarrassing.
Again - it happens randomly, and not all the time.


Other MS Symptoms I can experience

➽ Mood Swings: My mood can change from moment to moment (more than normal, that is), plus my bouts of depression seem a little more ramped up and intense when they randomly kick in, from time to time. I can't always stop/prevent it, nor always pinpoint a 'trigger'. It is a very antisocial and embarrassing situation.
Again - it happens randomly, and not all the time.

➽ Leg Spasms: They feel like momentary tiny pinpricks (like a tiny electric shock/jolt) in my calves and toes. The painless sensation makes 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.

➽ Foot Cramps: I usually have to sit up still for five minutes, with my foot down, and they pass. [qv. Leg weakness and Spasms].
Again - it happens randomly, and not all the time.

➽ Slight Hand Tremors: I also experience slight hand tremors, which often make it appear that I am nervous or agitated (when I am not), and also often prevent me from effectively using my hands in normal life activities [qv. Hand Numbness].
Again - it happens randomly, and not all the time.

➽ I also occasionally get unexpected spots of itchiness, for no apparent reason. More bizarre unexplainable MS symptoms I have.
Again - it happens randomly, and not all the time.

➽ Brain "Zaps" are difficult to explain, and also happen rarely and unexpectedly.

➽ MS also sees me experience shortness of breath, which will involve me having to stop what I am doing, sit down, and wait until regular breathing recommences. This is very disruptive to any consistent and productive situation.

Bruising can seem to appear out of nowhere sometimes. However... [click].



▶▶ I've come to a point where I just have to accept that I need to ask for help with some things now.

▶▶ 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.






Bookmark this page: Mal's MS Symptoms

Peas be with ewe 
Mal

6 comments:

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

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  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

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  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.

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