Jolting limbs

[Buckley123]

Trying to sleep but my jolting limb movements that had settled are now back?

Anyone else ? Xx

[KayHimm]

Are they happening while you are falling asleep?

[Buckley123 in reply to KayHimm]

Yes sometimes in the day definitely worse as I’m trying to rest not like when your drifting off but as I’m trying to settle it gets worse it’s keeping me awake 🤦🏼‍♀️

Kay I’ve really had enough my lymph nodes in my neck are up and down stiff neck everything weak everything i know I post a lot on here it’s really annoying for everyone but it’s just going around and around nothing is getting better my ankles feel as if they could snap 😖 xxx

[KayHimm in reply to Buckley123]

You do seem to be having more symptoms. When is your next neurology appointment? You should write these down. I have had the jerking limbs.

Best thing to do when you see the neurologist is ask for clarity on what to be concerned about and what to tolerate. Ask what symptoms could be addressed through medication and what can’t. Are you on any neuro meds?

[Buckley123 in reply to KayHimm]

Thanks Kay no nothing I had this all when it started and this is when I had a active lesions but now it’s meant to be stable and it’s come back so I don’t know why !

My neurologist did say it can be irritated neves with inflammation and it’s not damage because I passed the emg I think it was but if that’s the cause the inflammation isn’t under control my I’ve given hydro 8 months now so he did say he will up it if need be but is reluctant until I hit a year mark xx

[KayHimm in reply to Buckley123]

I see. So he may increase your medication soon. If you get migraines, he may put you on preventative medication.

These neuro symptoms are scary, I know. Brains do crazy things.

Also talk to Dr d Cruz. Because he is an expert in lupus and APS, he will be familiar with neurological issues and be able to add to the understanding.

Hope you see someone soon. You must feel like you have been left to deal with all of this alone.

Xk

[Buckley123 in reply to KayHimm]

Thanks Kay I will I do a little yes like it’s no big deal I can’t even google because I frighten myself to death I guess if it was a progressive neurological disorder my neurologist should no ! It just feels like my body is not my own xx

[KayHimm in reply to Buckley123]

I know. Our brains are a big part of who we are. Your body has changed and you are trying to adapt to these changes. It is particularly hard when you get conflicting opinions as you have gotten. You are a complicated case. You are probably tired of hearing that and just wants answers, though!

Xk

[Buckley123 in reply to KayHimm]

🧡🧡🙏

[Buckley123 in reply to KayHimm]

Can I ask did you find out why you got the jolting zx

[KayHimm in reply to Buckley123]

No, but neurologist did say if it wasn’t while falling asleep, he was more concerned. I stopped getting it. They often can’t know what exactly causes each symptom. Did you mention the jolting before?

[MEGS53]

Hi. Have your B12 blood levels been checked?

[Buckley123 in reply to MEGS53]

Hey ! How are you ?

Yes I have pa so I have regular b12 shots so mines above range always now!

Thanks tho xx

[MEGS53 in reply to Buckley123]

Feeling a bit better now, thanks. Also, have you had vit D checked? And increasing magnesium might be beneficial too. xxx

[Buckley123 in reply to MEGS53]

Have magnesium spray helps a little vit d is little low but still okay but I take vit d every day anyway

What’s been happening with you xx

[MEGS53 in reply to Buckley123]

Been through the wars recently! Just recovering from breast cancer surgery - also been told I have cirrhosis of the liver!! And nothing - well, very little - to do with my alcohol intake. I've had a liver biopsy and waiting histology results - consultant thinks due to inflammation (maybe). Thanks for asking. xxxxxx

[Buckley123 in reply to MEGS53]

Oh mate I’m sorry to hear this ! You really have been though it! So brave !

I hope you feel better soon🧡

Let me know how you get on il be thinking of you xxxx

[MEGS53 in reply to Buckley123]

Thank you. xxxx

[Hidden]

I get this too - during the day. I’m blaming systemic inflammation, small fibre neuropathy and related fatigue.

I don’t trust neurologists enough to risk reporting this or other neuro symptoms now. They are on my list of specialists to avoid like the plague these days.

With me it’s my elbows and wrists - especially left. They just turn with quick involuntary movements. It’s an intermittent thing unlike my essential tremor-which is becoming very pronounced these days. I work all this stuff out for myself these days and like yours my EMG was completely normal. X

[Buckley123 in reply to Hidden]

Yes my neurologist told me it was due to systemic inflammation because if it wasn’t and it was damage I would have failed the emg test.

However if there is so much inflammation why doesn’t it show in my blood ? It’s all a massive mystery.

My neurologist is good but I’m sick and tired of getting no answers! How are you twichy? Xx

[Hidden in reply to Buckley123]

Mine does show in my blood a lot but the gaslighting CTD doctors have misinformed me and GPs and neurologist that this is all normal part of Sjögren’s and untreatable.

Then the stupid conversion disorder diagnosis came along a year ago and I’ve had to learn all about this nonsense and fight it tooth and nail.

Thankfully I’ve found some eminent doctor professors to help fight my corner now. But twitches, tremors, muscle spasms and seizures that aren’t evidenced as neuro inflammation by EMG, lumbar puncture etc are usually described as “functional” ie software hardware incompatibility/ conversion disorder.

So if you’ve found a neurologist who acknowledges and believes in systemic inflammation as a cause of neuro symptoms then hold onto them forever. A neurologist like this is a rare find and worth their weight in gold! X

[Buckley123 in reply to Hidden]

Thanks yeah he is good he’s actually London’s leading sarcoidosis specialist I found him on a group ! I went to see him to see if I had sarcoidosis but he thinks I haven’t he really believes I have uctd so I have to go with it for now.

I asked for a lip biopsy for sjogrens and the same ent agreed I needed it privately but then said no on a nhs appointment and left me with a member of his team.

Who discharge me with acid reflux

😂

I’ve seen so many idiot doctors even with mum it’s hard to trust any of them but dr Kidd I’m trying he also answers my emails and wavered my privet cost of seeing him before he transferred me to his nhs clinic in the royal free xx

[Hidden in reply to Buckley123]

Sounds great re the last part. Everything down in London or surrounds is better for rarity than Scotland. Might get name off your neuro of you by pm if okay? My fingertips are too pained to type more though xx

[KayHimm in reply to Buckley123]

Your neurologist does sound exceptionally qualified to handle a patient like you. Looks like he has expertise in lupus, multiple sclerosis, sarcoidosis and the neuro-inflammatory diseases. I would stick with him.

This is not easy stuff. But you need to feel you can rely on someone.

XK

[Buckley123 in reply to KayHimm]

Yes he is good k

I am sicking with him that’s correct he used to be a ms specialist who moved into sarcoidosis he has great knowledge of inflammatory diseases as you say !

How are you ? How you keeping x

[KayHimm in reply to Buckley123]

I am doing okay, thanks. Actually seeing neurologist tomorrow but not the one who specializes in neuro inflammation like yours does. I am like you and like to know what causes what so will try to get insight.

One thing you might want to ask Dr Kidd is what he thinks is causing your white matter lesions. Are they from mini strokes? Does he think you have certain antibodies that are not showing positive? Does he think you have a lupus-like autoimmune disease but, again, just not testing positive?

I would want to know what symptoms are central nervous system and what symptoms are from the peripheral nervous system. Sounds trivial but it is not. Most of my symptoms come from the brain. You are similar to me with the abnormal MRI and weird neurological symptoms.

If it is your brain that is causing the symptoms, are there medications that could help to quiet it down? I know you said he may up your Hydroxy.

My heart goes out to you having to cope with all this.

Xk

[Hidden]

I find due to lifestyle changes my body needs extra magnesium to cope with bed. It stops the jolting.

[Buckley123 in reply to Hidden]

Yes I have magnesium spray I stopped using it I shall start again today see if it calms it thanks 😊 xxx

[Karm]

I get that. Last night was pretty bad for me. Feel like I have no control over my body. Legs and arms mainly. Just jerk every now and again. I thought it may be a side effect from a mediation maybe? Any ideas?

[Buckley123 in reply to Karm]

I’m only on hydro I know it can happen for a number of reasons even anxiety or restless legs to inflammation! I hate hate it makes me feel out of control and reminds me constantly that something is wrong ! Mine only started when all this did! Xx

[Karm]

Hi Buckley123. Who do you see at the royal free? I go there and have seen a few different consultants and Doc's etc. I mainly go to joint clinic reumy and dermatology.

[Buckley123 in reply to Karm]

Hey karm I see dr Kidd he is very good have you seen him yet ? Xx

[Karm in reply to Buckley123]

Ok. I'm on hydro too. Could be that. Or any one of those reasons lol. Mine comes and goes. Only started again last couple of weeks after it not really happening or months.

No I haven't seen Dr Kidd. May ask and see what they say. What type of doctor are they. ? Thanks X

[Buckley123 in reply to Karm]

He’s a neurologist

You have the same as me ! Comes and goes hasn’t happened for months now and it’s back again strange isn’t it xx

[MissusTee]

These are called by pic jerks, I can get them quite badly.

medicalnewstoday.com/articl...

[Buckley123 in reply to MissusTee]

Oh really thanks 🙏 yeah me too I feel like a geriatric tbh 🤣🤪

[Cas70]

Dear Buckley - at the moment I feel I have had enough too - this illness is relentless. Until you get proper help - try all that has been suggested by others and if I can add a remedy - Deep Freeze pain plasters placed on my limbs and even the back of my neck seem to ease things for me. They last a good few hours and I spray my calf muscles with Magnesium. Asda sell these plasters £1 ea but you can buy packets of them most places now, I cut mine in half or even quarter. Good luck

[Buckley123 in reply to Cas70]

Thanks cas70 I really appreciate it il have a look my neck is a nightmare too for spasms!

How are you in general xx

[Cas70]

Rubbish! I had a chest infection and since then I am in a flare with stupid Sjogren’s cough. I am so sick of being sick ! It’s not like me to moan, but....... I’m not depressed just feel I have had enough of the struggle, especially when your Hydroxychloroquine eye test is moved twice and then the Ophthalmologist refers you on cos he hasn’t the proper equipment - aaaaaah Normal service will be resumed as soon as possible 🤪. List all that hurts from top to toes and it looks like a hypochondriac’s manual 😩. Bet you wish you hadn’t asked. Best of luck I hope patches help. X x x

[Buckley123 in reply to Cas70]

😖I’m sorry to hear you are suffering so much I wish you a speedy recovery !

I am lucky as we are waiting for my illness to evolve atm maybe stay uctd not sure I’m not as ill as others! But it dose still get me down ! So moan away my friend!! God knows I do ! Because I don’t have any blood work just scans to back up a diagnosis I get turned away by a lot of doctors who tell me I’m fine and yet it’s damaged my brain and I have many symptoms the same as everyone here!

I haven’t had a eye test yet I’ve been on it 8months but at a low dose !

Xx

[Greylamp]

We have been to hell and back with my 9 year old this year, and some of the responses to your question ring too true with me.

She has had UCTD since early 2017. She had a series of infections this year then started having drop attacks and myoclonic spasms. Nothing showed up in brain/spinal MRI so they diagnosed it as functional neurological disorder.

She ended up in a wheelchair from June onwards as she almost totally lost her mobility. The jerking episodes got worse and worse - super violent and up to 9 hours a day but they didn’t believe us, and in her notes it is written that she and I are both probably autistic - without assessment or consultation. Spoiler alert; we’re not.

On 24 September, we took her off omeprazole as we had realised that there was a high chance it wasn’t helping. Within two weeks, she was walking again. The limb jerks are so mild now, and I believe they will stop in the next week or so as they are down to 45 minutes a day.

Long-term omeprazole use causes b12 and magnesium deficiency. It also interacts with methotrexate, which she is also on.

I am more than certain that this was the root of her problems as they hadn’t checked her b12 since June 2017. There is a family history of pernicious anaemia and we are vegetarian so the risk factors were even higher. But she was written off as having a psychological illness.

[Buckley123 in reply to Greylamp]

So sorry to hear this really I am bless her ! I have pa too I have b12 shots too

I had a brain scan which showed lesions on my brain and I was diagnosed with ms (my mum had it ) anyway further investigation showed not to be ms and I’ve had uctd left out there as bloods are negative but because of my brain they have to Liston or I would have been discharged it’s crazy what these doctors get away with really it is !

I’m glad to hear she’s getting better ! I have been told mine was anxiety and ptsd by doctors after watching my mum die.

I had to pay for the mri to prove something was wrong I’ve been robbed off for a good few years before and to be honest I fobbed myself off! Blaming it on stress three kids work ect!

A lot of doctors just don’t know !

I see a good couple of doctors now if you live near London ? Xx

[Greylamp in reply to Buckley123]

I’m sorry you have been through it as well. My sister and I both have pernicious anaemia, and there are lots of autoimmune conditions on both my and my daughter’s dad’s side.

Unfortunately we are Scotland and there is only one paediatric rheumy in our area. I suspect she will be referred to our neighbouring health trust because we have made a fairly epic complaint about her care.

[Buckley123 in reply to Greylamp]

Same as me my mum had ms and my Nan has aps ! Xx