Good morning, Hope everyone is staying safe in this horrific weather! Over the last few weeks I have noticed that whilst lay in bed and quite relaxed my feet will suddenly, and completely out of the blue, jerk upwards at the ankle, so much so it makes me jump. I have read about clonus, but I was under the impression that with clonus, it would do the same jerky movements a few times not just the once. I am still coming to terms with all these changes and would appreciate some advice from those of you who have lived with this. Many thanks in advance
i have lived with this ms malarkey for nearly 9 yrs now-actually, thats wrong-its lived with me cos i was here first! (albeit it an univited guest)
yes, have had similar to what u describle-part of a limb or whole limb or whole body.
its scary initially! but through time u will learn to expect the unexpected! the body is a wonderful bit of machinery when its working effeciently-when its not it sure makes life ‘interesting’.
if they are becoming more frequent or interfering with ur daily life the mention to gp/neuro-drugs are available to asisst/reduce. have u looked at meditation? doubt if it will stop jerks but am sure will help you find a way of coping with them.
ps when i saw ur title i thought this was something to do with clouds! dunno why-my brain works in mysterious ways!
Runs the whole range, from the occasional jerk now and again to runs of repeated jerks, several times a minute. Probably related to the extent of the unrepaired damage and its location and cause. Mine built up from just a few instances a year of mild jerk in the leg to an extremely intense period of very violent body (trunkal) jerks over about a week, where it was hundreds of times a day, including in bed and sitting and sometimes standing. Now thankfully it has greatly reduced again to a relatvely mild jerk maybe twice a day. I took amaltryptaline but I am not cnvinced it brought the recovery; it might have happened by itself.
Hi Anon, Ive had jerking of all limbs throughout my ms, as ellie has mentioned they do just become part of your life, not a great deal of consolation when your new to this illness perhaps but just another symptom that you can be assured is shared by others. I have never taken drugs for mine, which is my choice however if they persist and begin to create concern im sure your ms nurse would be able to offer you advice too. Mine can present as both strong large movement predominantly in legs or small spasm type movements in my arms, hands and feet Joy
Thanks for all your replies guys! It’s so difficult to know what to rule in or out at this stage, and I sometimes feel like maybe I am over reacting, and then it happens again and again. I suppose the ms nurses etc are used to those new to all this being constantly full of questions, that’s why it sometimes helps to come on here and ask. Thanks again
Hi Anon, you do the right thing in sharing your concerns with both forum members and your ms nurse, everyone who contributes to the forum who has lived with this illness for awhile will tell you we understand your concerns, anxieties and fear of its often unpredictable presentation. And that is why it is so great that yourself and others in a similar position do. I rarely have opportunity to talk with anyone else with ms but I have to admit it is a benefit and was particularly in the first few years after diagnosis. We spend years getting to know ourselves and then one day we wake up and everything we know has been sent into disarray and we have to start learning all over. Joy x
very eloquently put Joy, and so very true. Thank you! X