Anyone know what this is? Weird body jerks.

[27Harper]

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

I have this in my arms and legs. They think it is a combination of three things with me severely low vitamin d. Suffering with migraines and a damaged left vestibular nerve. But my neuro seems to think it is all related to migraines (apparently though weridly the other two things normally only show up in migraine suffer' so all linked)

I notice it gets worse when I am dehydrated weridly. I find drinking alot of water helps me.

Although the usual stress, tiredness, not eating as well triggers it also.

I also have a tiny tiny non malignent tumour on my brain (they say it is not related but who knows).

I went to the national neuro hospital. They did a great job and sent me for a million and one tests. Really reccomend them.

Have you had your nerves mapped? Reflexs tested? Etc. Might be worth seeing if it nerve damage?

Also as well have you had a full body MRI that shows your full spine?

Nerves mapped? Nope. Nothing like that. My neurologist really just didn't seem to know or care why it was happening, and as soon as it didn't seem to be MS he lost interest. He also missed my Fibromyalgia, he mentioned it but made no attempt to diagnose it, which he clearly knew how to do. Could I possibly request another neurology referall? Also are there any treatments for NEAD? Or is it something that if you have it, you kinda just need to deal with it? Of course I have no idea what it is just curious xx

@Littlelondoner

No, he didn't feel the need to do an MRI since I had a CT Scan of my head, just my head not while body or anything. But aren't MRIs supposed to be more accurate than CT Scans and can pick up things that they can't? xx

Yes a MRI is alot clearer they can also use dye as well to get an even better picture.

But yes in my circumstances they tested for ms too which they looked at my spine for. As well as checking nothing was pressing on any nerves etc to give me twitches.

The nerve mapping is quite funny actually they basicly give you little electric shocks and follow it down your nerves. Makes you almost like picnochino with out his strings, twitching all over the place. Nothing more werid than someone else controling your body movement and your fingers wiggling.

As I was super worried at the time about MS the DR said to me to reassure me, that most peoples body twitches are nerve related and quite often in the back. Or from spine damage.

I started to drink more water, manage my migraines better now due to meds, & had neurological physiotherapy. They are now so rare. So I guess I will never know what they where.

But just sharing the testing & treatment process I went through 😊

Hope you get some answers and feel better soon.

Thanks hun. Maybe also get a neurologist who isn't totally clueless about anything other than MS xx

Good luck!

Are you on any medication for Fibromyalgia at all? I have it and some of my medication has caused this. Suddenly my little finger decides it wants to be two inches away from next finger. One time I was lying in bed on my side and my whole body jerked so upper body tried to meet lower body and legs, quite frightening at the time. Lots of other jerks too, wrists flapping upwards for no reason etc.

I am on quite a lot of medications, but I had them just as my fibro symptoms showed up And I wasn't on any medications then. I've found Pregabalin helps them a small bit but they're still very noticeable sometimes xx

I'm sure you've already thought of these things but just in case. I got similar reactions after taking antidepressants. I can't take them now and they stopped as soon as I stopped taking them. Just thought I'd mention on the off chance!
Really hope you get it sorted soon as it sounds very stressful for you

Thanks @DuckWaddle. I have heard of antidepressants doing that and was a bit panicked until I realised that I had then before I started them. I don't know if they made it worse though xx

I got sudden jerking legs, arms, nose twitching, whole body jerks. So odd. They got worse over time, which I suppose was due to increased levels of the antidepressants in the blood. I was taking amitryptiline and citalopam (sp?!). Anyhow I had to come off them immediately. Hope you get it sorted asap. I remember how scary it was