Who else gets myoclonic jerks / involuntary movements? I’m interested to hear what my second neuro will say about these. I didn’t have them when I had my first neuro appointment. I get them while I’m awake and (according to hubby) also when I’m sleeping. My most frequent one is a sudden head turn to one side (usually the left but sometimes right). My arm or arms will fly up; my pelvis jerks forward and my upper body sometimes lilts to the right suddenly (which is why I got a stick). My knees have buckled for a split second on a few occasions. Usually its just one of these but I’ve also done combinations. Hubby tackles this with humour. He names them all… I wonder if this will change my current FND diagnosis…I certainly hope it might prompt further investigations as I’ve not been convinced that they have been thorough enough to give me an answer one way or the other.
The only time I have them is when I fall asleep or as I am falling sleep. I get/got Dystonic Spasms for which I take Baclofen.
Are you taking anything for the Jerks?
Jan
The sudden movements you get when falling asleep are called hypnic jerks and are perfectly normal. My GP didn’t give me anything, just referred me back to neurology and has also referred me to physio. My only prescription is Laxido (tendency to get constipated).
I copied the following from Mr Google, yours are obviously a more serious and severe form of Myoclonic Jerks.
Myoclonus refers to a quick, involuntary muscle jerk. For example, hiccups are a form of myoclonus. So are the sudden jerks, or “sleep starts,” you may experience just before falling asleep. These forms of myoclonus occur in healthy people and rarely present a problem.
Hope the Neuro can help it must be very distressing for you, there must be something out there to control it. I’m surprised your GP hasn’t at least tried something.
Jan
I had a bout of very violent trunkal jerks earlier this year which lasted a few weeks. Prescribed Amiteyptaline. You need to keep in mind that just about any symptom associated with MS including myoclonic jerks can also be ascribed to FND
MrBobOwen, I’m all too aware of the fact that FND can mimic MS. I’d just like to be sure one way or the other. I had a full MRI but on a less powerful 1.5T machine and I was told that they also have a 3T. I’ve not had a nerve conduction test (forgot what it’s called) nor an LP (not that I really want one of those!) I just need to know that they’ve looked as hard as they can. If they still find nothing, then I can fully accept the FND diagnosis. If they do, then I’ll have a path to some treatment. I just feel like I’ve still got one foot in limboland…
Was that from the www.neurosymptoms.org site? It sounds very similar if not identical to what I read on there. Some days, I don’t get much. Other days it is worse. I think heat and stress aggravate it. My neck sounds pretty graunchy now, can’t wait to get to the physio!
I just googled myoclonic spasm and this was the first thing that I read.
Myoclonus Definition - Diseases and Conditions - Mayo Clinic
www.mayoclinic.org/diseases-conditions/myoclonus/basics/.../con-2002736…
Myoclonus refers to a quick, involuntary muscle jerk. For example, hiccups are a form of myoclonus. So are the sudden jerks, or “sleep starts,” you may …
You might find you don’t get a definitive name for the jerks you get. In MS we get varying spasms and or jerks. Nobody has put a name to my spasms, Dystonic is the closest I can get to naming them.
Good luck.
Jan
Hey although my current “misshap” has been very different with numbness etc, 6 years ago I had a very dramatic bout of myoclonic jerks in my legs and body and constantly falling over so know exactly what youre going through! its very tiring! Mine slowly went away after 6 months with good nutrition, walks, reiki, vitamins, yoga and all other random stuff 
I found caffeine, alcohol, stress or illnesses made it worse so ive cut out alcohol and do meditaton etc. If you are a lady are you on any contraceptives as alot are now realising that they can cause “sydenhams chorea” and myoclonic jerks so advises to stop taking immediatly if you experience symptoms.My current numb episode has also been listed on the pill I was taking that ive now dscontinued.
I hope you feel better soon and its lovely that your husband is being so kind and supporting you Sometimes it feel that it will go on forever but from my experience it does improve xyx
Hello, I get them but just small ones. My fingers lift up and elbow & wrist move slightly to the side.
Aiyana_rosel, compared to March and April these myoclonic jerks have calmed down quite a bit. For some reason though, travelling in a car seems to set them off. If I’m tired, I get them more often too. (No contraceptives, I had a hysterectomy after problems with labour - a wonderful, healthy baby though thankfully!) Xenomorph, I notice that my ring fingers move side to side sometimes. It’s odd, isn’t it? We work hard to learn to control our bodies from birth, take it for granted when we finally achieve it then it’s disturbing when things go out of our control again. I’m in the habit of making a movement look deliberate - if my hand goes up, I’ll make use of it being there by tucking hair behind my ear or scratching my nose. Not much I can do with the sudden jerks of my trunk though. That happened to me today in a supermarket - I was using my wheelchair so felt less self-conscious about it, funnily enough.
I do that too, Reikiblossom. When my elbow moves, I make it look it like it is on purpose like pretending feeling suddenly itchy then I scratch.
Hubby named a couple of new ones today. An arms and head combo (whilst in the car) was “I’ve left the iron on!” I forgot the other one. Laughing about it does help
Hi,
i suffer with myoclonic jerks. First learnt about them when I saw a neuro who told me I had a No No Nod, I still laugh about it and was pleased that I didn’t have a Yes Yes Nod or I could have got into a lot of bother. She prescribed Clonazepam which thank goodness has mainly got them under control. Before taking Clonazepam my whole body would suddenly jerk, in fact I actually slapped a friend of mine around the arm. Luckily she understood. I would be up into the small hours of the night jumping around, totally shattered. This was also happening all day as well. Now being on Clonazepam things have quitened down although they do rear their head when I’m tired. I had a head, neck and spine MRI. Hope you feel better soon, but if you have any questions please e-mail me and if I can I will answer any questions you may have.
Janet
x
Thanks Janet. I’m not on any medication at the moment (unless you count laxative!). My GP has referred me to the Neuro again but in the meantime, I’m being seen by a Physiotherapist. I will PM you, thanks.
Hey ah glad theyre calming down a bit. You sound like youre dealing with it well with humour It can be a bit embaressing so I didnt go out at much at first which wasnt good for me but yeh getting out and living your life regardless is better for your mental health hehe yeh I fell over in a coffee shop once and my neighbour keeps making me absolutely jump out of my skin by saying hello to me before I see him! I just think its quite funny my body doing weird and wonderful things 
take care and get better soon xyx
I know your post was a few years ago. I don’t have a diagnosis but have been told it’s not Epilepsy. I’ve wondered about MS because my Mum had it. Neuropathy was mentioned at the Epilepsy clinic because I have so many symptoms and now I’m on yet another waiting list. I have little jerking movements but have also had myoclonic jerks which lead to my GP suspecting Epilepsy. Yesterday after quite a major all over jerk whilst sat on the sofa I noticed I’d injured my shoulder. Dystonia was mentioned today by a friend and some of it fits.
Hope you got a diagnosis xx