Last reply 1 month ago
Effects of MS

Thinking back on all the ways MS has changed your life, what is the most stand-out symptom/ odd (re)occurrence/ embarrassing, funny or worst thing that has happened to you thus far?

I’m not trying to belittle anyone or their symptoms or journey, I’m just very of the mindset that if I don’t laugh I’ll cry!

To get the ball rolling I’ll start with my most annoying symptom. I fall. A LOT.
And my strangest symptom which is now becoming the norm during relapses would have to be faecal incontinence. I can’t help but laugh. 31 and I’m close to being sized for diapers! 🙈😂

Yes I do find falling more annoying than s*#%ing myself. Go figure.

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mlgilber1
1 month ago

I have so many annoying symptoms! My stomach in certain areas is now numb and tingly and just feels weird… it’ll also feel heavier on one side. It comes and goes, but happens usually everyday all day. And my most embarrassing symptom… well it’s a bit personal, but one day I noticed the right side of my butt crack felt weird lol. I went to my primary and she did an exam and it’s weird… the pains actually higher like vaginal nerve pain or something… It’ll burn bad and feel super raw like rug burn. Everything was fine and every test came back negative. All she could see was some redness and inflammation on the right side only. Then, it got worse and it’ll burn internally! I’ve been to my primary sooo many times, OBGYN, and dermatologist numerous times each and they don’t seem to care all that much because to them everything is fine. Then, to make it even more embarrassing my period decided to come right when I arrived at the OBGYNs office, but she still wanted to do the exam lol. I’ve discussed it with my MS specialist and he said I can blame MS if every test came back negative which it did. I pretty much have that painful issue 24/7, but some days are better than others. I’ve done a lot of stupid things since being diagnosed like trying to get in a car that’s not mine because I feel so out of it a lot lol. All I can do is laugh otherwise I’d be crying all the time!


dominics
1 month ago

I was giving a lecture once some 15y ago and was symptom free.

Without any warning I lost the ability to talk in mid-sentence. It freaked me right out.

I turned to the flip chart and started to draw the most complicated diagram I could think of to buy time.

It passed but came on and off for about 4 weeks. Totally random, totally unpredictable duration from 10-60 seconds and went and has never returned.

Not fun but an education in the transient nature of things that can happen.


amym
1 month ago

My mobility and having to over think every trip out of the norm to the point of anxiety if I’m not in control of how far and where I will walk.

A result of this was tripping up on a very important work event and grabbing on to someone to stop me falling. I could be mortified but, hey, it’s just me!


elisabeth_turner
1 month ago

So many stupid things!!! Poured myself a saucepan of wine a few weeks ago. At what point did my brain not think “that’s not a glass”. Get dates muddles up ALL THE TIME. Found out on Friday that I was photographing a wedding the next day! Thought it was the following weekend. Thank god my colleague got in touch!! Threw away my car key in a dog poo bin in the park. You do have to laugh, but sometimes I feel like crying too. Fed up with being the ditzy airhead 🙁


rivka
1 month ago

I can’t run, jump or skip anymore. I stare at them, they look back at me, but….they won’t budge. It really bothers me. No more daily runs, no work outs, no skipping down the street happily. That changed my life more than anything else. Not the worst symptom,, just the most stark “yes your life has changed” symptom.


amym
1 month ago

@rivka I hear you x


Anonymous
1 month ago

@amym I’m still mobile but when I relapse it usually affects my legs. It’s like having a dead leg that you have to be very weary of. Although I’m not currently relapsing the mindset stays with you. Stairs are still dodgy business and escalators scare the life out of me!


rivka
1 month ago

@aoife_brennan_1, yes, the escalators! Forgot about that! True moving torture machines. The fun just keeps coming with this disease.


keepsmyelin99
1 month ago

My weirdest symptom has to have been when my toes would move by themselves – the big toe on my right foot kept moving itself as far away as it could, almost like it was trying to join the other foot 😂
And my funniest story has to be when I fell whilst in Edinburgh and two police officers came running over to help me. When asked if I need help I said “Yeah, could you tell me the way to studio 1 theatre? I can’t find it” and I completely ignored the fact that I was sitting on the ground and unable to get up! My priorities were the show, not my walking 😂


amym
1 month ago

Yes! Escalators! It was so helpful when my physio explained why I now hate them. One of those things MS professionals know, but if it said to the GP “my legs are rubbish and I don’t like escalators” she’d have thought I was strange!


amym
1 month ago

People thinking I’m drunk when my balance goes.


d1zzy
1 month ago

I went to the local shop yesterday, realising I was having a wobble but thinking that the very short walk might get my brain focussed and prove I could power through…… halfway down the milk aisle it became obvious that I’d misread the situation! I got home by holding onto the walls of the shops and houses, and took so long my husband came out to look for me. He was quite traumatised when he realised I hadn’t been chatting and had actually taken 15 minutes to shuffle 150 yards. I laughed cos I knew I must have been a sight but I stayed upright! Yay🎉🎉 You’ve got to give yourself credit where you can!


nutshell88
1 month ago

not walking on straight path i look weak while walking
slow going down stair must hold fence even couple stairs pavement
bladder but manageable

My “favorite” moment so far is getting too hot walking to work and then veering off-course into a wall hanging, knocking it half off its hooks. I’m unintentionally getting good at physical comedy!


christine_murphy
1 month ago

Woke up in the middle of the nignt and realised i had wet the bed. Happened to me ten years ago also. No warning and ironically i had been feeling great over the lasyt few days. Not so much today. So unpredictable


denisejulie
1 month ago

Yes every time I speak on the phone my speech goes , when I bump into anybody my speech goes, I can cope with everything else , I just hate the thought that people can’t understand me and I come across as an idiot, l spend my whole life saying sorry, it’s the MS


Anonymous
1 month ago

Oh yes! The loss of speech mid conversation 🙈 I have to plan topics before calling to friends houses so I can have certain words or phrases prepared. It’s so strange not being able to have a normal conversation off the cuff.
I also suffer spoonerisms which I just laugh at now.
Instead of saying “kit kat chunky” I could say “chit chat kunky”.
I find these moments hilarious.


silvana_hansen
1 month ago

I hate losing words, so frustrating and I say things the wrong way round. Loss of spontaneity, every outing has to be planned, like when I had a baby to look after only now I am “the baby”. Is it far, do I have enough catheters and spare clothing. Do I have every medication for every eventuality? It’s like preparing for an army exercise. Can’t walk in a straight line. Once wobbled on a kerb and got beeped at by a passing car. They must have thought I was drunk. Wish I was!!!


Anonymous
1 month ago

I actually wish I was drunk most days. People would probably be more accepting of my shortcomings.
I haven’t walked a straight line in years.
Some days I am so unsteady I walk into walls. Quite embarrassing when there are witnesses around!


sherry_wine
1 month ago

So I like your post. It’s hard going through this and hearing stories like this do help even if embarrassing. So thank you.
As for embarrassing, I get muscle spasms in my bum causing me to twirk which have to laugh because there is nothing back there. I also wake up looking like a cat coughing up a hair ball because of the ms hugs somedays.


masteryass
1 month ago

I walk like I partied too hard which can be embarrassing and very annoying!


melissa_larkin
1 month ago

My most annoying symptom is my frequency or infrequency for the bathroom, it can lead to being very uncomfortable which in turns make me cranky AF! Embarrassing/symptoms I can get a laugh out of would be the way my brain and mouth have a serious lack of communication and my balance- in work a few weeks ago, in my head I said- ‘oh, she’s already moved to that tracker’, what came out of my mouth was ‘oh she’s already moved to the farm’ WHAT!? 🙈 balance… I could be walking in the middle of a wide, empty hallway and the next minute I’m bumping into the wall. My legs are destroyed in bruises!

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