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.
Sue