New symptom and it’s serious

Hello everyone,

I’ve headed this ‘new symptom’ although I’ve had this before years ago. I had it badly when Avonex was affecting me and I had to come off it. I’ve got epilepsy as well as MS and have complex partial seizures so I’m not sure if this is epilepsy or the MS playing up or both.

Without knowing it and only finding out afterwards, I travel been throwing temper tantrums and being really nasty to people. Fortunately so far only online to people I don’t know although that is bad enough. I got myself blocked from a Facebook group and only discovered this after wondering why I couldn’t find the group any more. I went onto hubby’s account to have a look for the group and found the group AND my abusive post. I also had some strange private messages come though telling me off for being ‘a vile person’ and I was perplexed.

I seem to be having absences and during the absences being rather nasty.

I don’t want this to carry on, this has got to be sorted.

flo xx

The fact that you’re only doing this online and not in person Florence is interesting. I’m not sure it’s only happening during an ‘absence’ though. It has been noticed on here in the past. It could be a case of being a keyboard warrior? You could ask your GP for a referral to the neurologist and have a review of the epilepsy. Are you on medication for the epilepsy? Maybe this needs to be looked at. Good luck!

Hello Flo

I had a bad reaction to Avonex as well (way back in 2002), with me it was cognitive problems, my memory was shocking as was my thinking. I used to write training courses for a living and found for example that the day after I’d injected, I was writing absolute rubbish - which I’d discover the following day and wonder why I’d written such utter tripe. I forgot appointments, couldn’t remember how to do things I was very familiar with (eg how to turn on the oven) and couldn’t communicate very well. This meant I couldn’t explain my problems to my neurologist as I used to inject the evening before my appointments.

Eventually I figured it out (it took 4 months of weekly injections!) and just didn’t take it one week, which enabled me to communicate the problem to the neurologist. He (lovely Professor Giovannoni - I was lucky enough to be his patient) explained that occasionally beta interferon can exacerbate existing problems. At that time I had no idea that I might have any damage that was likely to affect my cognition.

Once I stopped the Avonex, these cognitive problems vanished immediately. Although gradually over the years, my memory and cognitive processes have declined, I have never had a resumption of the real difficulties I’d experienced on Avonex. It’s now 18 years since those cognitive issues due to Avonex happened, so the decline in cognition has been a) incredibly slow, and b) nowhere near as severe. I can generally think and write properly. I may have trouble with remembering words at times, and when I’m fatigued this gets worse. I also find that I can’t remember the plot of a complex TV drama or a novel. So my cognitive issues have snuck up on me. They are real this time, caused by my 23 years (nearly 24!) with MS not by a drug.

My point here Florence is that while the Avonex might have exacerbated an early cognitive problem, it might be that what you have discovered recently is due to MS having caused real and lasting cognitive damage.

I agree with Poppy, there have been a few times in the past that you’ve been both hyper-sensitive and rather aggressive on here. So the problem might be more wide reaching than you think. Are you certain that the problem only occurs during ‘absences’? And only on line?

Do you keep a diary? Maybe it would be an idea to start one? You could write (purely for yourself) details about how you feel. Whether incidents and people are upsetting to you, or whether you feel attacked, very angry and/or maybe abusive. Later, you could read back what you’ve been feeling and that might help you to identify where and when the problems occur.

Seeing/speaking to your neurologist would be a good idea, both to discuss epilepsy and MS in the light of your behaviour and feelings. Having a diary to refer to might help.

I’m saying all this purely in the spirit of good will by the way, I think you’ve been very courageous in opening up to us about this.

Best of luck.


I think I’m only doing it online is because I’m not going out and spend most of my time online. Years ago when I was up and about I did it all over the place but I usually remembered it. Now I don’t remember the events at all.

I’m on Tegretol for the epilepsy

Thank you Sue. It was interesting reading your experience of Avonex. I don’t want to play oneupmanship but my experience was far worse than yours but it WAS similar. I became very aggressive and I mean KILLER aggressive. I was mad. I was on it for nearly three years and during that time the insidious side effects crept up slowly and gradually and I lost all sense of reality. The absences I had back then were monsters. This does seem to be a minor repeat of those days. I came off Avonex in 2011. It took nearly three years for me to feel I was right again, so that takes me to 2014. Now in 2020 I won’t touch MS drugs but I think the effects of Avonex might be for life. I’m certain Avonex caused the epilepsy and absence seizures.
you know, I’m not aware of any times on here when I’ve been aggressive. That might be memory not absence so being reminded might be useful.
My neurologist is doing telephone appointments only at the moment and I’m not good on the phone. I’m now word blind and I do talk rubbish. During my annual appointment this year I told her I cloud walk. I CANNOT walk, so why did I tell her that? I don’t know!