Myoclonic jerking

[capabilityfrowns]

Hi
I'm currently under investigation for MS due to an optic neuritis and other odd symptoms.

I've recently been diagnosed with fibromyalgia by rheumatologist.

Around 4 months ago I began to experience myoclonic jerking as I fall asleep . It's quite violent and happens every time I try and relax to sleep or nap . It's affecting both legs , both arms and torso.

I do have MRI booked for end of month for spine and brain .

I stupidly googled today and none of it was good news .

Anyone else with myoclonic jerking that's not had a terrible diagnosis of something horrible or progressive?

Yep.
I too thought I was heading for an MS diagnosis. My B12 was borderline low, the GP agreed to me having B12 injections, and most of my symptoms resolved. Coincidentally I was also put on high strength Vitamin D, Vit D deficiency can cause this too.
I also have fibromyalgia (along with other things) although I didn’t ever have optic neuritis.
I hope, once you have had all investigations, things aren’t as serious as you fear

I have b12 injections and take daily vitamin d ! Same as you

Nothing has made a difference and I'm permanently absolutely knackered. At the weekend I sleep around 18 hours straight .

I work from home 3 days and go to office 2 and find that absolutely wipes me out . My quality of life is zilch.

And now when I sleep I have these ridiculous myoclonic symptoms that wake me up. I've got sleeping tablets but I feel drowsy and hungover if I take them . Can't win.

One consultant said I have chronic fatigue but without a definitive diagnosis they won't refer me to cfs clinic .

I wonder if this is all to do with fibromyalgia?

My immune system has gone wappy and I was also diagnosed with latent tb and Lyme disease but both those have been treated.

Yet I continue to get new symptoms. Funnily enough I've never had COVID o a cold in years, blood tests point to my body fighting something- they just don't know what !

Hypnic jerks (at the cusp of falling asleep)/PLMD (during sleep) are the same as hiccups aren't they? I wouldn't worry. Cut down on caffeine/booze/fags if you indulge in such.

It's just weird that it's just started and is so violent . My sleep is totally ruined.

I googled and it's indicative of several progressive neurological disorders, ms, and other not great things .

I've lost sight in one eye due to the neuritis as I've got permanent nerve damage .

I don't think his is coincidence tbh .

I didn't know there was a name for this! It's usually when I'm almost asleep and sort of dreaming, often of something not entirely pleasant. I presumed it was some kind of psychological thing. Feels like a full body twitch that's strong enough to raise me off the bed an inch or two, so I feel the landing back on the mattress. Sometimes it's just my legs though. Does that sound the same for you? I've had it decades. It hasn't got any worse.

Ah bless you. If you have health worries generally I can see how you've got the wrong end of the stick. Jerking when you fall asleep is a hypnic jerk, not myoclonic seizure. It's strictly classified as myoclonus, same as hiccups are, because they both involve involuntary jerking movements. But hypnic jerks aren't seizures, any more than hiccups are. Loads of people jerk and twitch as they're dropping off - it's incredibly common. Try to practice good sleep hygiene if it's becoming bothersome.

Myoclonic seizure also involves jerking but it's different because it's, well, a seizure. It doesn't just happen when you're going to sleep, and it's mostly young kids that get them.

With me it's new , and it's like an electric shock but no pain , an arm , a leg, or torso . Just a sudden involuntary jerk of a limb or torso that wakes me . It's just one jerk , but can be really violent .

It's not that thing where as you fall asleep you think you're falling - it's absolutely out of the blue and a sudden involuntary jerk like lightning quick but violent .

My gp was worried it was myoclonic epilepsy but I don't think it is

It's a new symptom and lulled with my other symptoms it's worrying me .

Another gp is also thinking MS after the neuritis , which is often the first symptom.

it's absolutely out of the blue and a sudden involuntary jerk like lightning quick but violent

Yes, that's it, exactly! Look, here:

https://www.sleepfoundation.org/parasomnias/hypnic-jerks#:~:text=Hypnic%20jerks%20%E2%80%94%20also%20called%20sleep,is%20when%20these%20jerks%20occur.

Just one of those weird things that happen around sleep. I get them too. I also have had phases of Exploding Head Syndrome! Really!

But why now ? It is something associated with MS which is my worry along with dementia, Parkinson's, other degenerative diseases and brain tumours .

Given my other weird and sudden onset symptoms I'm bothered.

I’ve just seen a private dr this evening about violent spasms and that’s what I’m being tested for too. And exactly the same had treatment for low B12 too. After never hearing about this illness it’s a super weird coincidence to see your post!

OP I found life improved when I faced facts, gave up work and accepted I was unwell. I can now sleep, which improves things and if I'm not good in the morning because of the sleeping pill it doesn't matter. I couldn't do basic self care consistently before and to a level that prevented me getting ill all the time or keep on top of the usual life admin and ordinary housework because I was too tired from working. My performance at work was poor too and caused its own stresses, although nobody had noticed because I had a lot of autonomy in my job. I lived alone so there was no support from anyone else. I had no quality of life and it was unsustainable long term. Not saying this is your situation yet but maybe something to consider if it turns out your symptoms aren't temporary and can't be cured.

I also live alone although I've hired a cleaner and a buy meals on wheels .

I need to work . If I do t work I don't have a roof over my head .

I'm just really worried this is all symptomatic of something not good .

My mobility has deteriorated over 2 years. I now need aids to use the loo , walk and get upstairs.

My eye is permanently damaged.
I'm permanently knackered.
And now this weird jerking . Never happened before . Just started a few months ago . It happens every single night . It happens if I try and nap during the day . Every single day . Both sides - all limbs and torso .

I had it. I have Fibromyalgia and osteoarthritis and previous broken pelvis and both hips. RA specialist diagnosed Fibromyalgia due to the trauma.
I SI vitamin b12 every week.. not once a month or every three months but every week. I also take folic acid for to aid absorption.. l take vitamin D and magnesium and it stopped 6 years ago when l started weekly b12 injections.
A lumber puncture will detect any MS.. but my friend has MS and in my opinion l don't think you have it.. but everyone is different.

It's not that thing where as you fall asleep you think you're falling - it's absolutely out of the blue and a sudden involuntary jerk like lightning quick but violent

It's interesting they think you have CFS so do I and something similar to this happens when I'm awake but totally exhausted. Usually in my arm when I'm carrying a cup of tea. I think it's just the muscles giving out at carrying the extra weight. Involuntary sudden jerk lightning quick but violent is a very accurate description. I have patterned carpets to hide the stains.

No I don't think I'm falling when it happens as I drop off to sleep but I am often having some sort of not entirely pleasant dream and only half-awake/asleep. I suppose it's that other thing Finbrek posted about.

Do you get brain zaps too? Mine is like that sound a fly makes when it hits one of those fly-killing lights and is stunned/electrocuted/however they work - I hear that noise, feel the mental equivalent to radio/TV static as a zap and my head sometimes jerks too. It's not painful and it's caused by exhaustion, for me.

I had a lumbar puncture but they were testing for active tb - all the cvf fluid was used up as it's a big test . They ruled out active tb and diagnosed latent tb.

I'm having a needle aspiration on my knee in feb due to the Lyme antibody detected in my blood test and I have a massive pocket of fluid in my knee - athritis but don't know if it's Lyme athritis or something else .

I just feel fucked ! Whenever I think they have an answer they muddy the water with something else and now I'm having this jerking when I relax .

Optic neuritis is often the first symptom of MS .

I guess the mri will help show if it is ?

I need to work . If I do t work I don't have a roof over my head .

You would, it just might not be the same one you have now 💐

Yes - I've just come out (fingers crossed) of a months-long phase of really violent jerks.

Have also recently been tested for MS, though I didn't know that's what they were looking for until the neurologist phoned 😳 He diagnosed fibromyalgia to go with my ME-CFS and a couple of other things.

Hoping you get a less scary result, too. Even if not, it'll set you on the right treatment pathway but, of course, it's better to have something a little more mundane. 🍀

No brain zaps - but tinnitus

Pins and needles in my hands and weirdly - buttocks !

Mobility issues and pain - both ankles feel like I've been hit with a hammer , knees , thighs ache , hips ache , back aches .

I'm also struggling to find my words . Embarrassing in the phone at work . Concentration shot - I walked two minutes after a recent appointment before I remembered my car was in the other direction.

Optic neuritis is a worry, indeed. I'm very sorry you've lost the use of an eye.

I don't know what meds you're already on - if it helps, I take an antihistamine every day and make liberal use of aspirin to combat inflammation. I've got steroids for acute use, but try to avoid using them - I will end up having to take them every day and want to delay that as long as possible!

I keep my bed very hot, using an electric blanket. I do end up throwing the blanket off various body parts as I sleep, but the heat definitely helps with pain. Come to think of it, it might have helped the jerks as well - I didn't make a connection, so haven't monitored that.

I get this, but when I’m wide awake. I suddenly feel like I’ve had an electric shock, or someone has stuck a pin in me, and whatever part of the body it happens in will then really violently jerk/shoot out. I’ve had it for 30 odd years and hasn’t progressed to anything, though I do have M.E. I’ve been investigated for MS a few times and always been clear. Try not to worry too much.

I'm also struggling to find my words . Embarrassing in the phone at work . Concentration shot - I walked two minutes after a recent appointment before I remembered my car was in the other direction.

CFS brain fog will do that. It's rotten being unwell. I hope you get answers soon and that they can do something about it.

Sounds exactly like fibromyalgia. They will cross off all other test-able conditions first, like MS, but look up fibromyalgia symptoms on their website, there is a lot! When I'm having a "phase" I can muscle twitch to the point of throwing mugs across the room as its exactly like having an electric shock. Sometimes this phase lasts a day or sometimes a week. It's fun :/

Women also tend to be low in magnesium, have you had yours checked?
A common symptom of magnesium deficiency is twitching and cramping in the muscles. In more severe cases, this could progress into seizures or convulsions.

Thank you . I'm currently not on any treatment. Nothing new anyway , I take hrt, antidepressants, blood pressure meds, vitamin d, b12 injections, folic acid , but nothing new .