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Body lock!

Hi all

Something weird has been happening to me for a while and I thought I would ask whether any of this has happened with any of you…

For about a month and a half, my left hip has been hurting - more so when I am in the cold. I feel like it’s old age getting to me (I am 27)… I have ignored it or just tried to stay as warm as possible. A few times when I am sitting I feel a little uncomfortable so have to keep moving to make me feel ok. Also, my left teeth have been sensitive to anything cold for a while. No ice cream, yoghurt or even cold water - if it does touch it for whatever reason, it does hurt.

About a month ago, I got hit down with an ear infection. After finishing off my antibiotics, a few days later I began to feel a lot of weakness on the left side of my body especially my arm. I was trying to hold out my arm in front of me and it just kept dropping. While I was holding a few things, without realising I was dropping them and so on. 5 days of experiencing this I finally called my MS nurse to let him know what’s going on. He asked me to give in a water sample to rule out a water infection. All came back clear. A few days later, I got my strength back and all was well (thankfully)

Now… I woke up on Monday morning and got out of bed. Only to have complete weakness/I don’t know exactly how to explain it so I will try my best - I felt my left side was in a bit of pain, like I was losing my balance, like I couldn’t walk. I felt stiff, as if my left hand was going and wanted to stay in a claw position and I had to keep bending down. The worst part of this was I was desperate to use the toilet and felt like I was going to wet myself. Not being able to feel the floor under my left foot, I somehow managed to make it to the toilet - a success. However, I was still in some pain and in a claw/bent down position. Note that all of this happened within a few seconds - but it felt like it was never ending.

Getting out of the car after being stuck in traffic for about an hour - I felt the same. Sitting in the car on that same Monday… I felt like I was going into a body lock position - it was awful. Tuesday, getting out of bed and the car was the same but for the rest of the day I was ok. Wednesday, Thursday and even this morning it was the same. Looking at the pattern, it seems like the more ‘comfortable’ and ‘relaxed’ I am in a certain position for a long time, I feel the same symptoms coming and going all lasting a few seconds each - but they are the most frightening few seconds ever as I feel my body is going into a lock and I am forever going to stay like that

I saw my MS Nurse on Tuesday (not for this but I did tell him about it). After doing a neurological examination of me and my previous drop arm symptom - he said all is well and it is not a relapse but there is some tissue on my neck which is scarred so my reacitons on the left side were more ‘brisk’ than the right side. I’m not an MS specialist nor do I think i’m clever - but I feel as though I am actually having a relapse. He doesn’t think so. Again, he asked me to give in a water sample to rule out an infection. I have not heard from my doctors as of yet and will give them a call soon to see if they know anything yet.

I feel scared getting out of bed/the car/off the sofa every day now thinking this is never going to get better - I make out like nothing is wrong though and walk as normal because I want a normal life. While I have these short ‘episodes’ - I feel very cold and i’m continously shaking.

Has any of this happened to you before? Am I doing anything wrong? :frowning:

Hi Anon

I haven’t had this as severely as you but I did have something similar with my left arm. It used to get stuck for about a minute or two in one position and my hand used to be stuck in a claw position. At the same time I used to get very hot and my son had to help me take my sweater off a couple of times because my arm was stuck and I couldn’t move it. Sometimes it would happen after I had moved my neck and experienced l’hermittes (the electric shock thing).

This preceded a sensory relapse in my left arm where it began to itch and burn horrendously and felt like I had ants under my skin. I spent a full week with left arm hanging out of bed because I couldn’t even bear the sheets touching it. The MS nurse took a week to get out to me and then prescribed amitriptyline. She described it as feeling like sunburn. It was much more severe than I imagine sunburn to be - I have never been sunburnt but if that is what it feels like, people wouldn’t get sunburnt so often! It took a full week for the amitrip to kick in by which time I had had 2 weeks of barely sleeping.

My nurse tried to tell me this wasn’t a relapse because it wasn’t stopping me from doing anything (er, doesn’t sleeping count then?) but when I next saw my neuro and told him he logged it as a sensory relapse.

I would suggest you ring your neuro’s secretary and get these symptoms logged on your notes. Whilst they are not causing you huge problems at the moment, it may escalate and it helps to know when these things started. If, of course, it does turn into something worse then you may want to consider steroids if you feel it’s bad enough. Personally, I only take them for disabling relapses as I can’t stand the side effects. There are drugs available to help with this stiffness/spasticity if you are still having problems for some time. I still take the amitrip as I’ve never gotten rid of the burning in my arm :frowning:

Tracey x

Hi

Yes I get these MS symptoms. Your neuro sounds like mine and I think it is all part of the - well they can’t do much to help so we will just repark you brigade.

If I am in one position for a long time I stiffen up and often do what I call my pengiunn walk for several minutes before the nerves finally get the right messages through. Sometimes my fingers get stuck or the tendon in my right groin will not stretch and it is a bit of hell trying to stand upright. But they do come good and I carry on.

My temperature regulation is also adrift and I can be hot or freezing or one part of me might be freezing and the rest is ok.

Dropping things, poor coordination, iffy balance, limb weakness - all MS. You could talk to your gp about the poor quality feedback from the neuro and how it is not helping you. I should take a leaf out of my own book on this. Why do we make it easy for them?

I have found after some 13 years that I must remain relaxed and stress free to keep everything working. I tell everyone this upfront and then when I fall off my perch everyone is understanding and I don’t feel a failure.

If you have a urine infection this amplifies MS symptoms which is why they test but you should not be fobbed off if it is negative. I have also had to not trust how I move about but things have improved and changed as this is the nature of the beast. Accept what is happening to you so that you can deal with it better. If you need help from a Councellor ask. I used one and it did help.

Cheers

Moira

Thank you for the replies Elmo - the burning sensation sounds horrible. Sunburn isn’t that bad because i’ve had it before. I can imagine that it being due to MS it would be a lot worse. L’hermitties… Hmm. I don’t feel an electric shock thing anymore but I did have that as one of my symptoms a while ago. How long did the hand claw last for you? Is it always a few seconds or can it go on longer? Do you still have to deal with it? The worst thing is a day before I saw my nurse I googled up my symptoms and it seemed like it was spasms. Well, it sounded quite similar and when I mentioned it to him he just didn’t bother. I was hoping he would just mention steroids or even other medication. Grr. He kept trying to blame my new symptoms on the ear infection or me coming on my period/being near it as body temperature always goes up. I have had MS for 6 years and nothing like that has happened - and fair enough… New things are always happening so I can somewhat believe that Moira - what happens with you sounds very similar to me. Do you still feel the body lock and stiffness even now? I hope you did see your neuro or nurse… Sometimes you really need to put your foot down with them before they end up saying nothing is wrong. Could this be to do with dehydration at all? Or is that just me thinking something wrong? I’ve just felt the stiffness again because I moved a little. This has just been 5 days… Now I need to see how I feel for the next two days… And then my nurse or neuro will be getting a phone call off me. Thanks Xxxxx

Thank you for the replies Elmo - the burning sensation sounds horrible. Sunburn isn’t that bad because i’ve had it before. I can imagine that it being due to MS it would be a lot worse. L’hermitties… Hmm. I don’t feel an electric shock thing anymore but I did have that as one of my symptoms a while ago. How long did the hand claw last for you? Is it always a few seconds or can it go on longer? Do you still have to deal with it? The worst thing is a day before I saw my nurse I googled up my symptoms and it seemed like it was spasms. Well, it sounded quite similar and when I mentioned it to him he just didn’t bother. I was hoping he would just mention steroids or even other medication. Grr. He kept trying to blame my new symptoms on the ear infection or me coming on my period/being near it as body temperature always goes up. I have had MS for 6 years and nothing like that has happened - and fair enough… New things are always happening so I can somewhat believe that Moira - what happens with you sounds very similar to me. Do you still feel the body lock and stiffness even now? I hope you did see your neuro or nurse… Sometimes you really need to put your foot down with them before they end up saying nothing is wrong. Could this be to do with dehydration at all? Or is that just me thinking something wrong? I’ve just felt the stiffness again because I moved a little. This has just been 5 days… Now I need to see how I feel for the next two days… And then my nurse or neuro will be getting a phone call off me. Thanks Xxxxx

The hand claw thing only lasted a couple of weeks, thankfully. It happened at work a couple of times and that was in the early days when I hadn’t told many people so I was frantically trying to hide it.

Here’s hoping your new symptoms settle down soon. Keep us posted

Tracey x