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Original poster

Anyone know what this is? Weird body jerks.

37 replies

27Harper · 02/07/2017 23:23

I have had these weird body jerks for the past 2 years or so and I don't just mean like a little switch, I mean kind of like the jerks you get when you're just about to go to sleep and then suddenly wake up, but I'm completely awake. I've had a CT Scan and about 50 million blood tests but no vitamin deficiencies or weird diseases have showed up and the doctors just kind of shrug it off but it's very frustrating sometimes as it can make me drop things or stop me falling asleep, although I'm having terrible morning sickness that happens at night (night sickness?) So I'm not doing much of that anyway. Any ideas or has anyone else experienced this or know someone who does? Again no deficiencies at all. Thanks 💟 xx

OP posts:
Original poster
27Harper · 02/07/2017 23:25

Sorry forgot to mention it's usually like an arm or a leg, but sometimes it's the middle only body, like a tiny brief seizure? Not making light if epilepsy at all I just don't really know how to explain it 💟 xx

OP posts:
pinkoneblueone · 02/07/2017 23:27

My husband has had something similar for the last 8 years and they have been diagnosed as no epileptic attack disorder. Oddly exercise helps reduce the effects. I think stress and worry brings his on too.

pinkoneblueone · 02/07/2017 23:27

*non epileptic attack disorder

Original poster
27Harper · 02/07/2017 23:29

@pinkoneblueone

That's really interesting, I've never heard about that. I find it is worse when I'm stressed though xx

OP posts:
Cailleach · 03/07/2017 11:18

en.m.wikipedia.org/wiki/Myoclonus

Worth reading the above link OP... Probably nothing but might be a sign of something that needs a GP's opinion.

Original poster
27Harper · 03/07/2017 13:24

I have seen a neurologist but he was quite dismissive. I do have Fibromyalgia though so I don't know if it's connected? Kind of like a painless spasm if you know what I mean? xx

OP posts:
Miiaaoow · 03/07/2017 13:37

Do you have any dizziness with them?
I've had similar for a few years. But mine are often accompanied by a falling sensation.

I mentioned it to two different GPs who were not even remotely interested, but I suspect in my case, that it's an inner ear/ vestibular problem.
Note that dizziness doesn't always mean a full-on spinning sensation, it can be more subtle.

Original poster
27Harper · 03/07/2017 15:45

@Miiaaoow

I do get dizziness but that was put down to POTS. With the actual jerking no I don't get any dizziness, it's just plain ol' frustrating xx

OP posts:
user1490142285 · 03/07/2017 15:49

Anything like this?

FeckinCrutches · 03/07/2017 15:55

Sounds like my husband, he has Myoclonic jerks and is on medication for them.

Original poster
27Harper · 03/07/2017 16:21

It's not so much tremor-y as it is like a hiccup but in my arms, body and legs. And neck too.

@FeckinCrutches

I have read about that before but since my neurologist kind of just dismissed it as a tremor, and was not listening to what I was actually saying, I was never tested for this. Do you know what kind of medication he is on? And does he have any other types of seizures? xx

OP posts:
junebirthdaygirl · 03/07/2017 16:25

My dn had that from an early age. Sudden jerks . Diagnosed also as nonepileptic attack disorder.

hellhasnofurylikeahungrywoman · 03/07/2017 16:29

I am not a medical specialist but my initial thought was myoclonic seizures too, myoclonic seizures can appear in isolation or with other types of seizure. (I have worked with loads of kids with varying degrees of epilepsy over the years). Do they occur in clusters? If they do could someone video what happens so a specialist can see what they look like. Have you had an EEG while the jerks have been happening?

Original poster
27Harper · 03/07/2017 16:33

Some days I'll only get a few or maybe none at all, some days it's very frequently and I can't sleep because I keep jerking all over the place. I never had an EEG because all the neurologist did was check my reflexes and when everything was 'normal' he said he didn't feel there was a need for any more tests. I had a CT Scan a few months ago but that was normal so he took that as a sign that I didn't need any more tests? I'm not sure but I think he thought that I was talking about normal little twitches, not jerks, even though I explained this to him xx

OP posts:
FeckinCrutches · 03/07/2017 16:36

Nope, no other seizures. He used to get these odd jerks, not all the time, but when he was tired or hungover they would get worse. He dropped our baby when he had the last one, he went straight to the doctor to get it sorted. He takes Epilim now.

Original poster
27Harper · 03/07/2017 16:39

@FeckinCrutches

Yikes! Sorry to hear about that! I'm glad he got that sorted out I can imagine that must have upset him. Do you know how they diagnosed him? Was it based on symptoms or through tests and such? xx

OP posts:
FeckinCrutches · 03/07/2017 17:03

We went privately, he went through a series of tests with a neurologist then had a CT scan.

noitsnotteattimeyet · 03/07/2017 17:11

Definitely get someone to video you while it's happening and show it to your GP. One other possibility is that they're motor tics - ds1 used to have sudden full body jerks which were initially diagnosed as a form of epilepsy but eventually turned out to be tic disorder

Original poster
27Harper · 03/07/2017 17:19

My psychiatrist actually did give me a questionnaire for a motor tic disorder but my answers didn't indicate a tic disorder, and I'm sorry if I'm getting this wrong but aren't tics a semi voluntary thing? Like a voluntary response to an involuntary sensation? As you can see I'm no doctor lol but I get no sensation before it and have no idea when they're going to happen. And theu also happen in my sleep, which im not sure tics do? Feel free to correct me if im mistaken im just not well versed in it xx

OP posts:
noitsnotteattimeyet · 03/07/2017 19:19

No they're completely involuntary but they don't happen during sleep so that rules that out!

hickorydickorynurseryrhyme · 03/07/2017 19:26

Have you or your Neurologist mentioned Parkinsons Disease?

Original poster
27Harper · 03/07/2017 19:51

@noitsnotteatimeyet

Ah ok Thanks for the clarification, just wasn't sure that's all.

Parkinson's disease? Great now I'm worried. Nobody has mentioned Parkinson's to me. The neurologist did some co ordination tests and noted an essential tremor but otherwise he said I had no obvious neurological problem, apart from not running an EEG of course xx

OP posts:
hickorydickorynurseryrhyme · 03/07/2017 20:51

I'm sorry I didn't mean to worry you. Just with you mentioning jerking movements. I'm not a doctor though. Maybe you could mention it to them and hopefully they can rule it out for you.

pinkoneblueone · 03/07/2017 23:14

Your symptoms do sound a lot like not epileptic attack disorder. It took a long time for my hubby to get his diagnosis as he is epileptic as well but had not had a seizure for a few years now. Though he takes the attacks more frequently when he is stress out he can go for a few weeks without any at all. It does happen at night too as I had to stop hugging him at night for a while as it made me really anxious as t would wake me up suddenly