Hello, I was dx about 5 years at with rr ms, and after an initial bout of double vision and vertigo have been quite lucky with mainly sensory symptoms, a touch of fatigue and dizziness. On Boxing Day though, I had a full on tonic clonic epileptic seizure, and after being taken into A and E have been told that i cannot drive! (Very frustrating as bus services are very limited where I live, and there’s no way I can get to work by bus on Monday) I’m now waiting for a neuro appointment and MRI and EEG scans, but am wondering if anyone out there has any experience of epilepsy and MS? Google tells me that there is a higher percentage of PWMS develop epilepsy than others. Is this a relapse? What should I expect now? Thanks for your help, Gilly xxx
No direct experience, but the Barts & London cover the subject.
http://multiple-sclerosis-research.blogspot.co.uk/2013/12/epilepsy-and-ms.html
http://multiple-sclerosis-research.blogspot.co.uk/2013/08/clinic-speak-seizures-and-ms.html
I have to stop reading these forums now im even more worried ill get epilepsy
I am being investigated for ms after two years of symptoms, I had a tonic clonic seizure in August. Also had to hand my license in. Nothing showed on ct scan or EEG. Having MRI on Monday and neuro follow up on Thursday x
HI Have you been tested for Hughes Syndrome, as this can cause ms symptoms and siezures , usually more commen if you’ve had a history of miscarriage and DVT , you can look it up on the hughes syndrome foundation website best wishes Mully
Thanks very much all for the responses, Cat mummy, the percentage is still very low for people with ms also developing epilepsy, only about 3% so I wouldn’t worry too much! Cheers Little Sausage, I was asleep when I had my seizure so didn’t see it coming, though I have a strong recollection of a strange déjà vu dream, which may perhaps have been a warning sign? My MRI appt has come through for early Feb, so quite a wait till I see neuro. I’m kind of resigned to not driving now though, would have been grim a few years ago but now my kids are older and learning to drive so now it’smtheir turn to ferry me about for a change! Good luck with your MRI and follow up superbecks, let us know how it goes? Gilly xxx
Hi all, thanks for the replies. Catmummy, don’t worry too much, the percentage of people with ms who also develop epilepsy is very low, only about 3 or 4% so I wouldn’t lose sleep over it! Thanks Little Sausage, sorry to hear about your seizure, when you were getting close to the magic 12 months, shame. Do you have to tell someone about every seizure? Prescriptions are free already for me as I live in sunny South Wales! Mully, I will investigate Hughes Syndrome (Hughes is actually my name!) but my neuro said it was a ‘secure’ diagnosis of ms. I have my MRI appointment now for early Feb, so will presumably have to wait till after that to see neuro. Strangely I’ve already sort of come to terms with not driving. It would have been a real pain a few years ago when the children were younger, but now one is driving himself and the younger two are learning, so it’s their turn to ferry me about for a change! I can also apply for a bus pass, so will just have to adapt to a slower pace of life! Good luck with your appointments Superbecks, please let us know how it goes? Cheers, Gilly xxx
Sorry about the duplication, after I typed the first one and pressed ‘post’ it disappeared so I rewrote it. Later both reappeared. Apologies, Gilly xxx
Sorry to hijack this thread but as Hughes syndrome was mentioned and I had a DVT at the same time my CIS was diagnosed, I wondered if anyone knows if you can have Hughes syndrome and MS? They did find brain lesions so I am definitely a candidate for MS but I also get migraines and had a DVT so fit some of the criteria for Hughes. I don’t know if I was tested in hospital, I lost track of what they tested me for! Gilly I hope your appointments go ok.
Hi, was dx in 2000 rrms. Told spms in 2012. Had first epileptic fit 3 months ago and second one a couple of weeks ago. Now live in fear of another one. I hate this disease.
Hi Puddinglover,
Yes I have both, there have been a small number of on the forum - a small select group you’d think some body might want to do some research on us
It seems this may be more common than suspected. I got diagnosed with epilepsy after a period of memory loss that I just happened to mention to neurologist at a clinic appt. The MRI did show lesions in the predicted site (temporal lobe) and so no license for a couple of years until it hadn’t happened for a year. Fortunately for me the public transport is fine and although I have my license back haven’t bothered with a car, mainly because of fatigue that makes me reluctant to drive to work knowing I will be on autopilot by the time I go home during rush hour and, of course the transport is free. Like you, apart from an episode that landed me in hospital unable to stand up and walk without holding on 10 years ago I am still walking but dealing with the pain, balance, fatgue etc etc. that no-one sees. (do we have a different version of MS to those in the books?)
Really interesting reading. Recently my husband called the emergency number as i was confused, speech muddled, shaking uncontrollably and cold. it started with a headache and a sense of something awful about to happen. I am a positive person. By the time i got to hospital I was exhausted but had come out of it. I thought it was mini stroke, i didn’t get scanned, told they didn’t knew what it was, oh a part from a virus, not! Looking back, I have had a few episodes of waking and not knwing where i am, (sadly not booze, induced ), also happened in a swimming pool, when we were away, my husband could see i wasn’t right and got me out. Everytime, the answer has been “it’s nothing, or it’s MS”. I’m not convinced. Does this sound familiar to epilepsy, my son had Petit mal as a child, thankfully outgrown, but now has stonking migraines. Comments appreciated.
Hi all, though I’d give an update… Had MRI and saw neuro this morning. I have a lesion on my temporal lobe, which he thinks explains the seizure. He also said that the couple of episodes I had at the weekend where a strong wave of deja vu feeling washed over me were partial seizures, also caused by this lesion, (Twinkle, your feelings sound a bit like this?) This lesion may also explain my rubbish memory. Bad news is I am not allowed to drive for 12 months from the last of those episodes (kind of wish I hadn’t mentioned them now!) Hope everyone else is as well as you can be, Gxxx
Hi All,
I too have been suffering from seizures since early Dec. I saw neuro last Thurs who confirmed im having partial seizures and ordered an MRI and EEG. Gutted that i’m unabe to drive now and wondering what to do with my car!
I have also been having a range of symptoms and never seem to go a week without something else! Neuro suspects that my MS is very active. I have been on Copaxone since Sept and depending on test results, neuro thinks I might need a change of DMD. I have got used to Copaxone now and don’t mind the injecting and I havent’ suffered any side effects from the injections apart from the usual lumbs and itching, so nervous about changing.
My neuro is writing to my doc to prescribe meds for the seizures, can’t remember the name of them, something beginning with ‘O’. Feeling abit defeated at the moment but trying to stay positive!
Hi All,
I too have been suffering from seizures since early Dec. I saw neuro last Thurs who confirmed im having partial seizures and ordered an MRI and EEG. Gutted that i’m unabe to drive now and wondering what to do with my car!
I have also been having a range of symptoms and never seem to go a week without something else! Neuro suspects that my MS is very active. I have been on Copaxone since Sept and depending on test results, neuro thinks I might need a change of DMD. I have got used to Copaxone now and don’t mind the injecting and I havent’ suffered any side effects from the injections apart from the usual lumbs and itching, so nervous about changing.
My neuro is writing to my doc to prescribe meds for the seizures, can’t remember the name of them, something beginning with ‘O’. Feeling abit defeated at the moment but trying to stay positive!
Hi all,
I too have epilepsy as well as MS, though my circumstances are a bit different to all of yours I think. I have had epilepsy since I was 5 months old, and it is the MS that is new. I have right temporal lobe epilepsy, having mainly simple partial seizures but with the occasional complex partial seizure. I have never been able to have a driving licence which really sucks, but I think it’d suck a whole lot more if I’d had one then had to give it up. I don’t know if the two are connected, but it really woundn’t surprise me if they were. I’ve only been diagnosed with MS for about a year, so don’t have much experience of it, but the one thing I can say for it is that my fits seem to go up when I am more fatigued. In terms of my epilepsy, I tend to have both more and stronger fits when I let my guard down / relax so to speak, rather than which I’m actively doing / concentrating on something (e.g. last year 3 out of 4 of my larger fits all happened on the bus on the way home from places, way you’re sort of sat there mindlessly unwinding). Apparently this in quite common. It’s also more common to have fits at night than during the day, though this isn’t true for me. Hope this is some help.
Forest x
I have got an MRI scan booked for Thursday, as my GP agreed something happened and we could do with some indication. Most likely won’t show anything up now, so long ago, but at least she listened, and agreed a scan at the time in a@e would have been helpful.
I have got an MRI scan booked for Thursday, as my GP agreed something happened and we could do with some indication. Most likely won’t show anything up now, so long ago, but at least she listened, and agreed a scan at the time in a@e would have been helpful.
I was born with epilepsy and had it from age 1 = 12 and was blind with it from 1 = 5 luckly I don’t remember much of that the surgery went well.
My Neuro thinks that even tho I was DX with MS at 20 that I have always showen the symptoms like tired 24.7 and un balanced walking, why I couldn’t get throught school because I was always sick.
I think that the two conditions could have a link but there is no proof 
like I believe Parkinsons and MS may have a link, alot of people I know with MS have a someone in their family who has has Parkinsons but I am not doctor.