Page 2 | Myoclonic jerking

capabilityfrowns · 2024-01-11T23:55:49+00:00

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?

Original poster

capabilityfrowns · 12/01/2024 01:22

Pixiedust1234 · 12/01/2024 01:21

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.

Yeah been diagnosed with fibromyalgia. Just had a triage with talking therapies and been sent 7 videos to watch . Follow up in 2 weeks .

OP posts:

Silmar · 12/01/2024 07:30

OP there are lots of explanations for these symptoms and it’s unlikely to be a rare disease, especially if you’re fairly young. I’ve experienced hypnic jerks myself and they started to happen when I was anxious and worried about my health. I took steps to reduce my worrying and they went away.

I have seen a neurologist in the past for similar symptoms and he said usually the serious diseases start in one part of the brain which relates to one part of the body. So for example a MS lesion on a certain part of the brain will affect the right leg only. If your symptoms are affecting the whole body it’s unlikely to be MS, Parkinson’s etc. And without any headaches, seizures, nausea, dizziness it’s unlikely to be a tumour.

I know you supplement B12 and D, but what about other vitamins? Vitamin deficiencies can cause some very severe degenerative symptoms. Magnesium deficiency in particular can mimic MS. Doctors will often test your blood and say your magnesium is fine, not understanding that blood magnesium can be fine but the body is still deficient. I recommend supplementing, starting with magnesium and other B vitamins. Also if you’ve had too much B6 it can cause these symptoms as well.

And anxiety is a massive cause of these issues too. Maybe not all of them, but some of them. You’re clearly worried and it could be adding extra symptoms on top of whatever you started off with. If you reduce anxiety you may find that half of your symptoms go away.

BetrayedAuntie · 12/01/2024 07:44

Silmar · 12/01/2024 07:30

OP there are lots of explanations for these symptoms and it’s unlikely to be a rare disease, especially if you’re fairly young. I’ve experienced hypnic jerks myself and they started to happen when I was anxious and worried about my health. I took steps to reduce my worrying and they went away.

I have seen a neurologist in the past for similar symptoms and he said usually the serious diseases start in one part of the brain which relates to one part of the body. So for example a MS lesion on a certain part of the brain will affect the right leg only. If your symptoms are affecting the whole body it’s unlikely to be MS, Parkinson’s etc. And without any headaches, seizures, nausea, dizziness it’s unlikely to be a tumour.

I know you supplement B12 and D, but what about other vitamins? Vitamin deficiencies can cause some very severe degenerative symptoms. Magnesium deficiency in particular can mimic MS. Doctors will often test your blood and say your magnesium is fine, not understanding that blood magnesium can be fine but the body is still deficient. I recommend supplementing, starting with magnesium and other B vitamins. Also if you’ve had too much B6 it can cause these symptoms as well.

And anxiety is a massive cause of these issues too. Maybe not all of them, but some of them. You’re clearly worried and it could be adding extra symptoms on top of whatever you started off with. If you reduce anxiety you may find that half of your symptoms go away.

You seem to have overlooked op's optic neuritis

Feduptosaytheleast · 12/01/2024 08:23

Have you seen a neurologist? I have recently been diagnosed with Functional Neurological Disorder (FND) after having clear brain and spine MRI. It mimics several neurological conditions such as MS and Parkinsons. I also have Fibromyalgia and ME.

Efacsen · 12/01/2024 11:04

BetrayedAuntie · 12/01/2024 07:44

You seem to have overlooked op's optic neuritis

Show quote history

Optic neuritis isn't always a precursor of MS or a sign of active MS

It can occur alone without MS being implicated

Gogogadgetcat · 12/01/2024 14:22

@capabilityfrowns Is it safe and legal for you to be driving yourself right now?

It wasn't long ago you were saying how ill you were, bedbound due to your legs not working properly, and didn't you fall a couple of times? Now you've totally lost sight in one eye as well, no offence but it doesn't seem safe.

Gatewayerror501 · 12/01/2024 15:45

You can drive with only one eye. That's legal. As for the rest, OP doesn't have a diagnosis of something you can't drive with, so no legal reasons to stop driving. It's down to OP's judgement on a day to day basis, the same as for the rest of the population. Anyone can get ill temporarily or permanently. It doesn't necessarily mean they can't drive, even if they were bed bound at some point.

Onlyhereforthebatshitneighbours · 12/01/2024 15:53

Are you anti depressants? If so, have you had a recent dosage change?

Bodily jerking can be a side effect

Sorry you're going through so much

Gogogadgetcat · 12/01/2024 16:00

Yes I know that people can and do drive with visual or mobility impairments and I know people can get better after being temporarily ill.

I was wondering if she had been cleared to drive by her doctor (I'm sure she has), because she sounded really ill, and it sounds like she's just gotten worse.

I was also trying to kindly point out that it might not be very safe for her, or other road users, to be driving right now if the cause of her illness is unknown at the moment, along with how bad and inconsistent she was saying her mobility was recently.

Hobnobswantshernameback · 13/01/2024 20:11

Have they checked your LFTs and inflammatory markers?
If so what what were they?

Mynewnameis · 13/01/2024 20:15

Dh had this caused by stress which triggered functional neurological disorder

DyslexicPoster · 13/01/2024 20:24

Yes they can rule out MS via MRI ( or they did for me). I had some really weird nerve symptoms and still having some weird symptoms. It is really scary. Most of my symptoms was low vit D and calcification around my vertebrae. But the neuro said he’s less damage and more pain, also more damage and no pain. Once he explained it all and I had physio it went. I had a really bad EMG and it was really looking like MS as I had the EMG of a corpse ( well almost) but my point is, it wasn’t ms

Gatewayerror501 · 13/01/2024 22:48

was wondering if she had been cleared to drive by her doctor (I'm sure she has), because she sounded really ill, and it sounds like she's just gotten worse.

There's no need to be cleared to drive by a doctor. That's not how it works. You're either diagnosed with a condition that means your license is removed, temporarily or permanently, or you're free to make your own decisions about whether you're fit to drive at any given point. The OP has enough problems without you trying to make things worse by insinuating she's unfit to drive and shouldn't be on the road. As it stands at the moment, the only person who's opinion matters on that subject is the OP's.

mouseychick · 14/01/2024 12:32

Have you tried magnesium?

mouseychick · 14/01/2024 12:33

Gogogadgetcat · 12/01/2024 14:22

@capabilityfrowns Is it safe and legal for you to be driving yourself right now?

It wasn't long ago you were saying how ill you were, bedbound due to your legs not working properly, and didn't you fall a couple of times? Now you've totally lost sight in one eye as well, no offence but it doesn't seem safe.

I imagine OP knows this. From her previous posts they are trying to get her back to work at a location near her house (with a rubbish toilet set up). So I think she knows her capabilities.

Gogogadgetcat · 14/01/2024 16:29

Gatewayerror501 · 12/01/2024 00:43

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.

By your own measure are you insinuating that the OP is incapable of working?

No of course not, that's as ridiculous as you saying me asking after her is insinuating she's unfit to drive. I don't know what the problem is here, it seems like I've set you off for a weirdly defensive response for some reason.

What I asked would be a totally normal question where I'm from. 'Awh no that's awful! Are ye still alright to drive?' I really don't see your problem.

@mouseychick I'm sure the OP does know her capabilities, I didn't say she didn't?
I do think she's quite ill though and it seems like she's feeling under a lot of pressure to keep working.

If I were in her place it would be easy to imagine convincing myself that a short drive might be manageable if I was feeling alright, but I'd probably be worrying about it a lot every time I got into the car.
If someone asked me if it was safe to do that, and I decided on reflection that actually maybe it wasn't the best idea and that I had felt pressured into keeping on keeping on, it might make me look for alternatives that would work for me, and I'd be thankful to my friend for looking out for me.

mouseychick · 14/01/2024 16:31

@Gogogadgetcat fair point, well made. Apologies for my sensitivity earlier.

Gogogadgetcat · 14/01/2024 16:33

mouseychick · 14/01/2024 16:31

@Gogogadgetcat fair point, well made. Apologies for my sensitivity earlier.

No problem @mouseychick but thank you for seeing where I was coming from after I explained it a bit better.

Original poster

capabilityfrowns · 18/01/2024 21:15

Just popping back - thanks for the concern but yeah I'm clear to drive although I'm choosing not to much

I had a really bad fall today. My left leg just went from under me , I hit my face on a patio chair and ended up in a heap on the concrete patio - hurt both knees and grazed my wrist . Couldn't get back up .

I need a diagnosis.

OP posts: