I was diagnosed with probable RLS last year. This was after complaining of involuntary jerks, shocks or twitching. I had thought that this was myoclonus.
I have not started the suggested medication ropinerol.
The jerks or shocks happen at any time of the day or night in all 4 limbs, hands, feet head and face. They range from mild to strong. My sleep is normal. I feel no urge to move my legs or arms and do not experience any unusual sensations or pain.
I have recently noticed that the jerks are stimulus sensitive, as well as spontaneous. I jerk in response to sudden movement, noise, light and touch. I had previously blamed this on increased startle.
My question is: are above symptoms normal in RLS syndrome?
Thank you for reading and grateful for any responses.
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Peppermint-64
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I don't think it's RLS. See the diagnostic criteria in the link above.
You have no 'urge to move' and your sleep is unaffected. With RLS, the minute you sit to rest or lie down to sleep, the unbearable sensations start up and you have to get up and walk about or lie there and constantly move your legs.
I suggest you DON'T start Ropinirole ( these drugs are no longer first line treatment for RLS anyway).
Ask for a referral to a neurologist as it sounds more like dystonia or peripheral neuropathy.
I agree with Joolsg. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition
Thank you Joolsg and SueJohnson for the helpful replies and for the diagnostic criteria link.
I did see a neurologist but I think that she did not believe that the jerking is involuntary. I explained that the symptoms happen at rest. This is the case with negative myoclonus as opposed to positive or action myoclonus.
I told her about what I thought was increased startle (which started at the same time as the myoclonus). But this seems to have been disregarded completely. And it has taken me a while to realise that it is not increased startle at all but a definite reaction to stimulus.
I never did believe the RLS diagnosis after reading about the condition and have no intention of starting ropinerole.
I suspect that I may have myoclonic epilepsy. A type of epilepsy without absences which I have read about recently. Epilepsy was in fact mentioned early in the consultation but ruled out when I said that did not have absences.
I agree with the others. It doesn’t sound at all like RLS. I think one of the problems with RLS diagnosis is that even if someone is an expert in the field it is very difficult for them to tune into the description whereas someone who has it, expert or not, knows straight away. Other conditions folk can have empathy for whether they have it or not.I am one of the few people who don’t have PLMD as well so I have no idea what that feels but I definitely have marked RLS.
Someone on here who has PLMD might be able to tell you if what you describe is like their PLMD?
I also don’t know if you can have PLMD without RLS.
However to me it sounds nothing like RLS & I agree I definitely wouldn’t be taking eg pramipexole.
For epilepsy diagnosis neurologists & especially paediatric neurologists ask for videos of episodes to be sent to them.
If you don’t have absences you could perhaps do this yourself. It would help if it’s myoclonus as well.
I have peripheral neuropathy as well as RLS so from personal experience I can say it doesn’t sound like that ( was another suggestion )
I would definitely ask for a 2nd opinion.
If you are in the UK neurology waiting lists are huge so if you have the wherewithal to fund a private appointment that might help. Sometimes if investigations are vital ( will be if any form of epilepsy ) they then will transfer you to the NHS for these.
Having read some of your other more recent replies the link supplied by Widebody makes interesting reading. I think ideas are constantly evolving & links to other variants made.If I have read the article correctly it seems that nocturnal myoclonus has now been reclassified as a type of PLMD.
Definitely sounds as if a 2nd opinion would be useful with videos as we mentioned earlier & perhaps a RLS/sleep specialist ( think there’s a good dept in a London hospital somewhere ) would be useful
I’ve suffered with RLS my entire life, nearly 60 years now. With RLS it’s an overwhelming urge to move, not an involuntary movement. You can control it and decide whether or not to move, but not to do so can be torture. It’s like having your skin itching all over your body but you’re trying not to scratch. Yes, you control your hands, but not scratching is such unbearable torture that you end up having to it. But it’s always under your control.
The only exception is when you’re asleep or half asleep as your subconscious will respond, but that will wake you up anyway.
From what I’ve said you’re not suffering from RLS.
I spent at least a year googling nocturnal myoclounus. I would put myself to sleep rubbing my feet together. It thought it was soothing. I even googled why do I need to rub my feet together to get to sleep. I only went to the doctor after the involuntary kicks started. My Doctor said it was RLS, I said this is NOT voluntary. We went back and forth. It took me a long time to accept it. My wife finally admitted that my foot rubbing bothered her, then looking back I was constantly rubbing or moving.
Do yourself a favor, have your Doctor do a morning fasted full iron panel. Let us know what your ferritin and transferrin saturation percentage is. I would be interested.
Please don’t start the Ropinirole before the iron panel. It was an ugly ending for me.
Some of the terms I found were “exaggerated startle reflex” and hyperarousal. Yes mine is usually noise induced, even a stomach growling can cause a jerk. It did not get any better, it got really bad really fast.
Do the jerks stop if your concentrating or focused on something?
Thank you WideBody. Very helpful. In answer to your question "do the jerks stop if I am concentrating or focused on something?" They don't stop. And can sometimes result in a stronger jerk, similar to the hypnic jerks that awaken you when you are almost asleep.
I'm not tempted to start medication at present as am not in pain or experiencing any unusual sensations. They stronger head jerks can be unpleasant however.
I have a variant of RLS which does not fulfil the diagnostic criteria listed above in the comment from Sue Johnson.
My variant is more like your condition in that it does not fulfil criterion 1: urge to move. My arms and legs jerk violently without warning. It is also similar to yours in that it is stimulus sensitive. If my leg touches something very cold, like a steel plate, it jerks. If I hold hands with another person for a few minutes, my arm jerks. I usually get about a quarter of a second warning, but not always, and I can’t control it anyway. Sometimes I have to just stop the car in an inconspicuous place and let it rip for 10 minutes before carrying on.
It does fulfil the other four criteria.
I have long known that the diagnostic criteria are inadequate — they do not take into account my variant which is usually completely involuntary and stimulus sensitive. So before you abandon completely the idea that you may have RLS, you might ask the neurologist to consider that you may have a variant form of it.
I have had (my variant of) RLS for 50 years, steadily getting worse. I have been on dopamine agonists (pramipexole) for eight years and found them very good. I am also on gabapentin and clonazepam. I was living in the USA when these medications were prescribed, and I found the GP’s and neurologists there to be more helpful about RLS than in my home country, New Zealand.
With regard to the stimulus sensitivity, it can be the ping of a text message, a sudden flash of light, sudden noise, automatic doors, touch and even an odd twinge of pain can trigger a jerk.
Thank you Wairahi and everyone else. Some very helpful and informative responses on here.
Hi Peppermint-64, it would be good for you to get the right diagnosis. If you do have myoclonic epilepsy, hopefully the right medication would treat it for you without major side-effects. My son had myoclonic seizures when he was very little. It took a while to figure out what was going on with him, but he would have them several times a day; sometimes while intensely focused on an activity, other times seemingly at random.
Getting the diagnosis was fairly easy once I was able to convince the doctor it was happening (hard to explain that your toddler randomly falls down a lot, and it isn't normal). He had to have an EEG, and an MRI as well. MRI was clear, showed no tumors or anything, while the EEG showed abnormal activity with flashing lights and while falling asleep. We also went for a second opinion, just to make sure of the diagnosis. The other neurologist differed slightly in diagnosis, but treatment recommendations and outcome were same.
Medication that worked really well for him was Depakote (generic divalproex, I think), it stopped the seizures cold and he never had another one that we knew of. There was another medication we tried first which actually caused the seizures to happen more frequently and in clusters, although they weren't as strong. It's been a while so I forget what it was. The Depakote did seem to make him a little loopy at first, but once he had been taking it a while he was fine.
I hope you can get the right diagnosis and a good treatment protocol, whatever is happening with you!
Hi there, read with interest all the comments for your symptoms. One not mentioned is the long term reaction to psych drugs called tardic disconesia (sp) they now advertise a new medication to help with these symptoms. It’s not sensory but it’s involuntary and occurs throughout the body!! Of course, the doctors only see what is at the end of their noses and often have a preconceived idea of what they are thinking it may be!!! I guess as with many many guests on this site we are our best advocate and need to really be adamant that what they are doing is NOT helping! Good luck to you and keep searching for your answer
Thank you Crochetnany. I've looked it up and think you mean tardive dyskinesia. I'll remember that if things progress. Although I've not been on any psych meds.
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ropinirole update.
Relief for me
Has anyone had rls change to something else?
