To go back to the GP about this after all this time ? Worried it’s epilepsy

[Sandybeach97]

Around 2 and a half/3 years ago I started having these weird ‘twitches’. I’m awake and fully aware of them but they’re involuntary and I can’t sense them coming it. Sometimes it will be just my finger. It will just and go up and then back down involuntary. Sometimes it’s my foot. Sometimes it’s my whole body, I’ll suddenly feel a bit weird and then my body will ‘jump’. Just basically involuntary movements and jerks of limbs. I was really worried so I went to the GP and I had 2 scans of my brain and all came back normal. However, all this time has passed and it still happens. I’ve never had a black out seizure. Sometimes it feels like I’ve had an electric shock and my body will jerk. It mainly happens when I’m in bed but it’s not when I’m falling asleep. I’m fully conscious and awake, could just my scrolling on my phone and it suddenly happens. I would say it doesn’t happen as often but when it does it’s at least once a twice a night. Looking into it, I think they’re Myoclonic seizures. I’m worried about going back to the doctors as. I think they think I was making it up because my scans were normal but I’ve read it can’t always be diagnosed from a brain scan. Should I go back?

DD has these - we’ve never been able to find a cause (she’s also under a neurosurgeon for seperate reasons so investigations have been done & opinions sought) but equally it’s not doing any harm or causing any bother so we’re not worried. She doesn’t have epilepsy, nor does it sound like you do either to be honest. Everyone gets muscle twitches from time to time and it’s not something to overly stress about

Not sure what scans you had, but I would think an EEG would be needed to rule out seizures.
In any case, I wouldn't worry at all that someone might think you're making it up. Just go in and tell them what you told us - you had the scans but you're still experiencing the twitches and shocks. Let them look into it.

Hope this all resolves easily for you, OP.

I have juvenile myoclonic epilepsy, of which myoclonic seizures are a part. Usually they happen after waking, for the most part. They start off light but they get stronger - throwing a mug isn’t uncommon for example. They’re usually rhythmic. It’s fairly rare to get them alone without other seizure types, particularly starting in adulthood, so I would think it’s probably unlikely they are seizures. However, this type of seizure would show up on an EEG so that would be an easy solution.

There are plenty of other twitches, many of which are harmless, caused by various things. Tiredness, lack of certain vitamins, stress.

Hi Sandybeach

Did you ever find out what your jerks were? I have exactly the same thing. I’m 41 and have had about 2 years of Myoclonic jerks (progressively got more frequent…starting by the odd throw of my hand, now getting them all through the day all over my body) had all the blood tests and a MRI and all clear. Had a EEG and came back as possible focal seizure disorder because of results. Having to wait for a sleep and video EEG now. They want to start me on low dose epilepsy meds. Feel a bit in limbo and waiting my next appointment with neurologist to ask more questions.

just wondering if you ever found a cause for your jerks? X