Last reply 6 months ago
Changes in behaviour

I’ve had “benign”MS for a while 20 years or so, with no motor and little sensory problems, but I have noticed changes in my behaviour that are slightly concerning such as risk taking, disinhibition, and being detached emotionally from things that really should be attached. From believing I was fortunate to thinking I’m off my rocker! I take 20mg citalopram and 1000mg Keppra but I dont believe its the meds. Thoughts and experiences very welcome. Thanks Shifters ☺

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novemberrain
8 months ago

Btw I have many small widespread lonstanding lesions on MRI


vixen
8 months ago

Hi there. The complication is, of course, that these balances shift and change as we get older, as with all people. But I’ve noticed myself in the last year since diagnosis, I am way less to,errant than previously and equally, find my emotional highs and lows are a bit more extreme. Sorry I’m not much help, but I do get what you say and are going through x


stumbler
8 months ago

@novemberrain , as we progress through life, we do look at things differently.

We become more cynical and a bit detached from some realities. Take Victor Meldrew for example. Some may see him as a nagging, old git. But, I’ve reached an age where I believe that Victor Meldrew had valid points!


novemberrain
8 months ago

Haha! Well I’m only 41. I think it could be a midlife crisis of sorts but there are so many variables. I just wondered if anyone with MS noticed significant changes in their behaviour that they would previously have thought out of character. Appreciate the responses and the reassurance that I could in fact be quite normal 🤪😜


londonlad
8 months ago

@novemberrain
I was diagnosised last year after a sudden onset.

I’m 34, and would say in the last 4 years I noticed changes mentally, periods of depression and generally not feeling myself. I also noticed impact to my memory and a just a general lack of sharpeness. During these periods I tended to drink heavy, and also would sometimes act recklessly.

I just brushed things aside as I had some big life events during those years, loss of a parent and difficult breakup. So I kind of ignored how I felt and thought it was purely due to these.

For me; I kind of found some relief knowing theirs been a reason I’ve been feeling so “off”. I’ve also seeemed to have benefited in my thinking since taking Tysabri. And stopping the booze!

Don’t ignore your feelings as our instincts are usually pretty good .
I’ve read some articles suggesting that damage to certain areas of the brain can impact, decision making.

Anyway, you not alone.


novemberrain
8 months ago

Thanks @londonlad. Life events could also be why I’m behaving differently, like I said earlier there are so many variables. Temporal Lobe Epilepsy, losing my driving licence, moving house, MS diagnosis confirmed following TLE, new meds (not MS), marital issues. All designed to make a person a little batshit crazy right? Dissecting all this is time spent better elsewhere. I think just being aware is a good thing. I will have a word with myself before a night on the prosecco, giving it up is not an option. Especially as I can’t drive right now. I’m never the designated driver 😀


cammo
8 months ago

@novemberrain I have lost my “filter”. I say whatever comes into my head and if it offends people I really don’t care that much.
My wife says I have gone frontal (as in I have had a frontal brain injury)

It is quite concerning but also quite invigorating at the same time. I don’t think it is the MS, I think it the psychological effect of being diagnosed with MS.

It’s like I was diagnosed and my mind though… ahhh stuff these social boundries/restrictions just say it how it is. life is too short now.

I am like that embarrassing uncle at family events who says inappropriate things.

It is fun (for me).


novemberrain
8 months ago

Ha, hmm yes like you can get away with more because you have a reason perhaps. Thanks @cammo. No filter, all my friends know I’m blunt and to the point. I wear my heart on my sleeve which people might take as offensive but I am designed this way, it’s not a new thing either. But neither is the MS, just the confirmation. All so interesting…


novemberrain
8 months ago

The big question is : is the behaviour something that is out of your control (unconscious) or one that you can overcome. The jury’s out here.


nutshell88
8 months ago

Detached emotionaly, taking risks.
I totally suffered that for few years. It ruined my entired life. Living with the conciqueses till this second. I almost cried a second ago before reading this post thinking where was my maturity. How did I burnt everything that matter in a second and insisted on it unwisely for way too long.
I even cant believe I’m the same person because before all these things ive done I wasnt like that I ruined my life to make a risk and now Im back to “ I’m not like that and I would never do them again”
But still there is unfitted thoughts general life thoughts are misplaced in my brain. They are new to me although I realisr I was good before MS happened. To become worst than my 10 years younger sisters.
13 years and not disabled 0.0 disability but with atrophy. And off treatments.

Try your best to control ur mind its shooting all over blindly.


nutshell88
8 months ago

My brain was trying to run away and ruin it self with me out of panic and confusing without realising it was like a brain of another person.


Anonymous
8 months ago

Hey @ novemberrain

I get what you are saying. In the year leading up to my diagnosis I was all over the place and behaving quite out of character. I was in my own wee world and it’s hard to describe really. But yeah totally emotional detached from a lot of things and people. I don’t know it was like I was forgetting about others and just pleasing myself, where before I always put others first. It was a hard time for those I was closest too, at the time I had no idea I was being this way. So at the time it wasn’t hard on me, I only really got upset when people got angry with me but that was because I didn’t understand why.

It was a hard time in my life but it let me see who is important in my life. I mean you don’t just give up on someone, I think my real friends knew something was going on with me and they stuck by me.

@cammo haha love it! I’m totally like that too! But I’ve always been that way, but since the MS I’ve got worse. I’ve always wore my heart on my sleeve too and let people know what I think. Some don’t take it that well but I do it because I care!

Take Care xxx


novemberrain
8 months ago

Thank you @nutshell88 @avrilt. It has given me insight into something I only considered 2 days ago. Invisible MS hey. Those lesions are doing their thing up there. Little buggers.
Sorry you came to blows with your risk taking nutshell. It’s a lesson. I have always been emotionally immature but I put that down to other factors when I was growing up. A friend teaches mindfulness and shes doing a 6 week MS Mindfulness program. I’m there 😊


sciencegeek
8 months ago

It is emerging that there is a link between MS and Theory of Mind/Empathy. Maybe take a look at some of the recent research and have a chat with your MS nurse of neuro.

http://onlinelibrary.wiley.com/doi/10.1111/j.1468-1331.2009.02836.x/full

http://www.sciencedirect.com/science/article/pii/S0303846712005616

Personally, I have noticed that my Asperger’s seems to be “worse” lately. However, like you there is a lot of other sources of stress in my life, and I’m not getting enugh sleep lately. I know that these all make me less likely to be able to mask my Aspergers. I’m also hitting an age where I care a lot less about masking it too.

I do wonder if the MS is adding another layer of cognitive issues for me, though.


novemberrain
8 months ago

@sciencegeek I too am a science geek so thanks for the publications, fascinating stuff. What’s an MS nurse ha?!! Can’t beat a bit of self diagnosis, I like to work things out for myself but it’s apparent there are many faces of MS that need further investigation. Knowing others encountering similar issues really helps. You’ll Never Walk Alone 😘


nutshell88
8 months ago

No worries u never brought it up i carried on now successfully. The effect of my mistake still presents but life hoes on and i was thinking of it before reading ur post.

Regards

Yes, I do, I take depekote so I completely understand your frustration, but I’m lucky to have them rarely because they are controlled by medication.


novemberrain
6 months ago

After having done some research (thanks Dr Google) I think it’s called dissociation and/or emotional blunting. The cause? Probably my SSRI antidepressant which I am now scaling down. Could be the temporal lobe epilepsy. Could be the numerous demyelinating lesions. Could just be life. Do I care? Not so much. But I hope to soon 😊 I am behaving a little out of character with some risky behaviour and no thought of consequence. Dangerous…


stumbler
6 months ago

There is always this delightful symptom, which may play a part :-

https://www.mstrust.org.uk/a-z/pseudobulbar-affect-pathological-laughing-and-crying


novemberrain
6 months ago

Thankfully not at the moment, my MS is completely invisible. Sounds horrendous though tbh! But good to know @stumbler ta

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