Hiya, this is my first time posting! I wondered if anyone had experience with spinal myoclonus?
I was diagnosed with relapsing remitting MS in 2021 after vision problems, an MRI with some lesions and spinal tap. I’m on Brabio injections.
I’ve been stable for 18 months, but around springtime started experiencing involuntary jerks from my pelvis/lower back area. They’re never painful and fairly minor. Initially it would happen when I was lying down, but then started happening whilst I’m sitting and even standing, making me jerk upwards - its a bit embarrassing. When it happened a lot my back got a little sore.
I saw the doctor about a month ago and we started a trial of Baclofen which helped reduce them. I came off it for a couple of weeks whilst I sorted a repeat prescription, but this week my lower back started seizing up, becoming very painful. One day I was totally incapacitated and needed Diazepam and Naproxen to even move again. But other days its totally fine. The jerks have continued throughout.
After ruling out a back injury, my doctor mentioned spinal myoclonus. Does anyone else have this? Currently the plan is to try and control the jerks with an increased dose of Baclofen, but I want to know if they’ll ever go away and how I can protect my back in the future. Thank you
Hi,sorry but no, Not heard of it. Sounds awful for you. Dont think it’s a typical MS thing…but you never know!
Boudsx
I have just started having myoclonus in my latest relapse. I get it mainly in my hands, and face, my mouth just opens its weird, that’s where it bothers me most and it is an unpleasant feeling. I do also get it in my legs and back but it is fairly mild for me, fortunately! I get the back one when I’m lying down and sitting. Mine came with tremor when I try to do anything wit my hands which is also very frustrating. I’m sorry I can’t help with how to manage when it’s more pronounced, it sounds like I got off lightly but I can at least say that someone else gets it and it is an MS symptom. No idea how common it is but you’re not alone!
Hiya, I know this is an old post but it’s the only mention I could find about myoclonus. I have the same thing you are describing and just had my worst twitch attack (that’s what my boy calls it) so far. It lasted about an hour and it scared me quite a bit. I’ve had an mri which showed ‘whitening’ on my lower spine, still waiting on neurologist appointment to explain more but due to mri results and the extent of my symptoms I’ve got an emergency appointment with the spinal specialist on Wednesday. I’m just hoping they will be able to give me an answer 
Did you find out if it was linked to ms? Did you find anything to help?
Hope you are ok x
Hiya NiceCupofTea, I’m very sorry I didn’t see your comment on this post at the time. Thank you for sharing your experiences with clonus. Having it affect different areas of your body sounds like a lot to manage, and the tremor as well. I hope it didn’t get any worse and you are now doing well?
Whislt it is something my MS nurse and neurologist recognised, it doesn’t seem to be all that common?
Best wishes, Laura
Hi Kyla,
I’m sorry to hear you’re struggling with a similar kind of uncontrollable jerk/twitch/spasms. I’m glad that you have upcoming appointments with some specialists that are taking it seriously and who will hopefully help 
I still have what we think is spinal myoclonus. After some experimentation and talking to my MS nurse and neurologist, they put me on Clonazepam which helps controls seizures and is a muscle relaxant. I take it at night as it makes me drowsy, so have had to cut out other things like antihistamines and the Baclofen as I was falling asleep all over the place! I also had physiotherapy for my back problems and have been doing yoga which has hopefully ensured no permanent damage and a return to mostly normal life.
After being on the Clonazepam for about 6 to 8 months I managed to see my neurologist and get an MRI scan which came back clear, not showing any new lesions. But I do have existing lesions and they said that the myoclonus might just be a way that my MS presents. My jerks are also impacted by my stress levels, illness, tiredness and heat (which kind of makes sense). Situations where I am expected to stay still for long periods can be triggering, like the theatre, meetings or the dentist (!)
And unfortunately I am pretty dependent on the Clonazepam, as the jerks come back without it and also insomnia and anxiety (sometimes I accidentally fail to get my repeat prescription on time). My neurologist said there are other meds which could control the jerks, so I’m considering trying something else, especially as it looks like I’m going to be taking these long term.
Sorry for the long post, but essentially it’s under control and not gotten worse. I really hope that helps. Please do let us know how you get on. I really hope that you can get a treatment plan and feel more comfortable soon.
Best, Laura xx
Hi, don’t worry about quick replies…the MS isn’t going anywhere and only time can really answer what is going to happen. My symptoms were agreed to be a relapse and I seem to only ever get partial recovery from relapses now.
Has yours improved? It sounded very disruptive for you. Mine has improved, I don’t take anything for it. If I am unwell, infections etc. any of the symptoms might show up that are less noticeable the rest of the time. I have very gradually worsening numbness in my right side which seems to be related to it, it is definitely my right hand side that is most affected by most of my symptoms. I started with symptoms in my right side 12 years ago, and they left me with some numbness and every time a weird thing happens on my right the numbness gets just a little bit worse. It is a lot more noticeable when you look at me when I am talking and my face on the right side isn’t moving as much and if you didn’t know me before you probably wouldn’t take much notice.
Thankyou for your reply 
Yes that all sounds very familiar! Staying still, stress, tiredness etc definitely make it much worse. I’m glad you have been able to get back to a sort of normality, I will ask my doctor about a muscle relaxant and see if that helps!
The spine doctor examined me but couldn’t explain all my symptoms and said perhaps a pinched nerve could cause some, but said it shouldn’t be causing all my other symptoms so I’m back to waiting for my neurologist appointment and the rheumatology appointment 
she was very nice and referred me for physio but I really wanted an answer and was hoping she’d say it is a trapped nerve that it would be ok after a bit of time and that would be it 
but no such luck.
She said she couldn’t rule out ms but that I needed to see the neurologist to get an answer to that, and also a head mri which means going back in that tube!!🫨Fibromyalgia was also seriously talked about this time (rather than the pretty dismissive response I had when I raise it with my gp) so that’s a possible diagnosis.
At this point after years of dealing with stuff and it getting worse, I just want an answer even if it’s ms I just want to know 