Just wanted to ask whether anyone else had experienced seizures or been diagnosed with epilepsy pre MS diagnosis. I’d never before heard of epilepsy being a symptom of MS so just after some other people’s knowledge of experience of this. Seems to be a big double blow to me! At least that’s how it feels right now whilst both are unknown and uncontrolled. Any advice or information would be great! Thanks 
Hi Lils It really is a double blow isn’t it. My neurologist said that 7% of people with MS develop epilepsy. This happened to me too. I started to have fits 10 odd weeks ago and had a MRI to check to make sure it wasn’t a stroke of some type. They found several lesions on my brain so I got the news it was both MS and epilepsy (though waiting for the lumber punchar to cofirm). I’d been having fuzzy legs for a few weeks but put that down the the fits I was having. Was a massive shock to say the least, MS had never entered my head and I knew nothing about it (though looking back I did have a few symptoms in the past - problems with my bladder and eyes). Lost my driving licence - which has been really difficult. I can’t drink because of the epilepsy medication (though since I started taking them I have had a fit) so it’s all been a bit of a shock. How are you coping ? What’s happened to you?
Haven’t had a fit *
Hi FinHerts, thanks for getting back to me, it’s good just to hear from someone else who’s been going through a similar sort of time, although obviously I’m sorry you have been as it isn’t nice!
I had my first seizure (tonic clonic) out of nowhere in June. Had another within about a week and at this point was sent for further testing; MRI and EEG whilst also being diagnosed with epilepsy and started on medication. I was told from the get go that getting medication right could be a long journey and not to expect miracles immediately. Unfortunately I’ve continued to have seizures and every time I’ve had one my meds go up. I thought we may have cracked it but after being two months seizure free I had another on Thursday evening so… yeah, not ideal. I’m taking Keppra, currently 1250mg morning and the same dose in the evening. I feel like I never have much of a chance to adapt as the dose is changing fairly regularly, but generally it doesn’t make me feel great. I feel quite dizzy and fatigued and hazy. Really just not myself.
When my MRI and EEG came back, both were abnormal and the neurologist said my brain mri looked like that of someone with MS. And so I’m now booked in for a lumbar puncture, spinal MRI and some eye testing to confirm MS diagnosis or not. It may well be that some of what I think have been side effects of epilepsy medication may actually be MS related but… I’m not sure. Either way it’s been a horrible, scary and worrying time and although I’m usually a very positive person I’ve struggled to stay positive all of the time. Really I suppose I’m just at the start of what’s going to perhaps be a very long road…
I’ve been trying to get on with work and keep things as normal as I can but when I’m not feeling physically right this hasn’t always been easy. I sort of thought we may have got the seizures under control but having this last one on Thursday gave me a bit of a shock. All just been a lot to take in and adapt to, and lots more adapting to come no doubt!
I too have lost my driving license which hasn’t been easy. Although I can get the bus to work and things, it’s hard not being able to get myself to a big supermarket easily and it feels like some of my independence has been whipped away, which as a 29 year old, isn’t nice.
I suppose the only way to manage is to ride it out every day and take each day as it comes. X
My wife started having seizures and losing he speech. We thought we had it traced to her dosage of Baclofen and when the dose was reduced she was seizure free for a year and a half. When she does not drink or eat enough or if she has a busy day she seems to be prone to very short periods where she will put Her head back in her chair and have a mini pass out/loss of lucidity session. Last night however she had a full blown fit while in bed and lots all speech and reasoning for an hour or two after waking up. We are waiting for a phone appointment on Wednesday with the MS team at Newcastle RVI hospital. I am convinced that the baclofen is much more trouble than it is worth but please be aware if you are on it that you should not come off it straight away as this may also be dangerous. She is not newly diagnosed so this might be in the wrong part of the forum but I though it was useful info all the same.
My wife has had MS for many years and in the past 3 years has had a few very far apart seizures. We have an appointment with her MS nurse on Wednesday so if I get any information then I will try to remember to post it on here.