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Scary, very, very scary

I’ve had a mild cold for a few days which has knocked the MS a wee bit out of kilter. Then on Wednesday I started getting UTI symptoms. By Wednesday evening, these were significant. I was guzzling gallons of water and getting up to go to the loo was becoming increasingly difficult as the UTI started affecting my mobility. I was making so much noise that my wife decided to go sleep in the spare room.

At 2:30am I tried to get out of bed. By now the legs were becoming rigid and my feet slid away from the bed and I ended slowly falling to the floor. For 15 minutes or so, I tried and failed to get back on the bed. By now, the legs were totally rigid and I was scared and was panicking badly. I shouted my wife and she eventually came through. More huffing and puffing but even with her help, I still couldn’t get back into bed as I couldn’t bend the legs at all. Now I was really worried. After a heated debate my wife called for an ambulance. The guys who came were great and after an hour in total of being on the floor, they finally managed to get me back into bed. Although this was a first for me, no doubt they’ve seen a lot worse many times before and their calm demeanour, combined with their strength, solved the problem. I still couldn’t move my legs though but after a further hour or so the rigidity eased somewhat.

The rest of the night and the following morning, I slept on the chair as it was easier to bend the legs to get me upright.

I started antibiotics and these have started working on the UTI. The legs still aren’t great but are miles better than before.

The hour spent on the floor was one of the scariest moments of my life. No matter how hard I tried and no matter what way I tried, I just couldn’t move at all.

Thankfully no long term damage done.

derek

Hi Derek, I share your horror, as my legs have let me down, literally, many times. I have the records of about a dozen ambulance calls to get me back up when I’ve fallen indoors. I have collapsed on the tarmac of our drive at 10.30 at night. A neighbour saw me and come over to help me get back inside. I although I have PPMS and am slowly deteriorating, I have not fallen for several years now. I think it’s partly because I have become used to my new body, and what it can and can’t do, and partly through exercise and physiotherapy. Your UTI probably exacerbated things. The ambulance crews who came here have been brilliant on every occasion and they don’t seem to mind a bit about a little heavy weight lifting. Best wishes, Anthony

i agree about paramedics.

if it was up to me i’d give them a whopping pay rise.

i fainted in the kitchen and knocked myself out on the quarry tiled floor.

what i need is a bouncy castle flooring!

The last couple of times I fell over was as a result of a UTI. And each time required a long wait sitting on the bathroom floor waiting for the lovely paramedics to bring their inflatable cushion to get me back up. We should all own one of those cushions. Shame they cost a load of money. If I owned one, I’d be able to exercise on the floor then get back up again. Which would be better for my entire body and make falling less likely.

But having your legs just stop working is, as you say Derek, really scary.

Hopefully they’ll continue improving as the UTI gets better.

Sue

My full sympathy Derek! That’s what happened to me almost three years ago, and was my first experience.

I had returned from a holiday abroad and developed a light cold and sore throat.

Terrified, lying on the floor in the dark unable to understand what was happening. It lead to my being ferried to a and e via ambulance, and my diagnosis of ms. No lead up to this. I too was found to have a uti, which caused a raised temperature, which in turn exacerbated the underlying symptoms. Without doubt, the most scariest experience of my life.

Derek that sounds like a horrid experience, thank goodness the ambulance people could help. So far I have not had to call them out but I have needed help from people in the street and our postman when my MS decided that I needed some quality floor time.

I don’t like falling but I absolutely loathe the inability to get up, once I start stressing about it , it gets a 100 times worse. I am desperately trying to lose weight so that if I need to be picked up, I don’t cause my helpers any damage.

I hope you are as recovered as you can be and that this scary stuff does not happen again.

Mick

Hi Derek Three weeks ago I woke up with my right hand and foot feeling more numb than usual. I managed to take myself to the bathroom sat on the loo and had great difficulty standing up again. I managed to reach the wash basin when suddenly my legs would no longer support me. It did not matter how hard I hung onto the wash basin my legs collapsed under me at a very odd angle. I was stuck on the bathroom floor for half an hour refusing to let my husband call an ambulance. On reflection not the wisest decision! It took 30 minutes to get me back on my feet with the aid of the side of the bath, my husband and a rollator. We managed to get back to the bedroom but it took several hours before my legs would support me. I did not have an infection and this has not happened before. The MS nurse told me I should have called the paramedics so they could check me out. Hopefully it will not happen again. I have had three falls since January but I have an appointment with a neuro physiotherapist next week and I hope this will help.

Sue

Three falls since January is quite a lot really. It must have scared you silly if it’s not happened before. And if you are certain you don’t have an infection, it certainly sounds like you need something to help you strengthen your legs. Physiotherapy should help, but it’s not a magic cure and you have to be careful that you balance it right - too much in one go can have the reverse effect and make your legs weaker.

Have you looked at what drugs you’re taking in case something isn’t quite right?

Falling is so horrible. It makes you feel such a fool apart from hurting yourself and struggling the get back up can be even more weakening. I’m always so concerned about my husband trying to help me I’m case he hurts himself. The way I look at it is that we only have one decent pair of legs, strong back and arms between us, so we have to look after them.

Sue

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Hi Sue Thank you for your reply. As I have progressive MS I am not on any drugs. I have deteriorated quite a lot in the last six months and I have progressed to EDSS 6 in a very short time. As the MS seems to be quite aggressive my consultant is considering putting me forward for a cladribine or biotin trial. I am waiting for the results of my latest MRI which I had at the end of January perhaps I should chase the result. My consultant wanted to determine whether the deterioration was down to neuro inflammation or neuro deterioration. Sue x

Having legs that were completely rigid was bad enough, but it was the feeling of utter helplessness as I lay on the ground unable to get myself back up that really rattled me. Up until then, I’d always been able to get myself back of my feet when I fell. Getting in an absolute state and panicking in no way helped the situation but I defy anyone to remain calm in those circumstances.

As I said earlier, no real damage done.

derek

About 6 months ago my wife called me at work to say she had fallen on kitchen floor and couldn’t getup for over an hour which scared her a lot.She thought she had over done it a bit by showering and washing her hair in one go(normally needs to do one or other.) She felt her legs going and kind of slid down with some sort of control holding on to worktop with arms.

Think she is a bit more careful when no ones here now, but i have seen a few gentle falls and near misses too.Last friday(-6 degrees here,and this idiot running out of heating oil,dont know if that helped!) She fell right in front of me,fully forwards,she hadn’t been feeling great but movement round house hadn’t seemed much worse than it has been recently,but the sudden fall like this really shocked me(she played it down,well denied it actually), luckily she fell clean to floor with arms out front so no real harm done but was so quick this time if something was in way she could have knocked herself out. She’s not really at the stage where she needs looking after the whole time but i just wish she would stop trying to do too much,it does worry me but know she gets fed up with me asking how she is and causing a fuss!

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A very scary experience - glad things are improving. Why would an UTI affect mobility?

Uti is an infection. An infection can raise the core body temperature. This in turn can exacerbate symptoms or bring on new ones. A relapse. I’m like a wet dish cloth after the heat of a shower or washing my hair. Incidentally Sue84, I was told I have the grand score of 7 about 9 months after my dx. Saw my neuro Monday and she rates me 7.5 as I now use a wheelchair. Not quite Strictly Come Dancing scores!

Derek glad you’re on the road to recovery UTI’ s knock me for six. I am catheterised now so not such a problem but I did fall over a couple of weeks back and the first time I have used the ceiling hoist to get me from floor level. We were not sure if it actually went down to floor level as only used to get me from bed to wheelchair before. Floor time is not recommended so take it steady. XXX Don

Can I ask a question about this. I’m not in your situation ref balance etc, but one thing that has crossed my mind since the dx is that I live by myself and if I was in the same situation that you described what could I do but shout and pray someone heard me passing in the street. If I couldn’t reach a phone I could be there for more than a day or two. I know I could slip and fall without ms, but obviously now this may be more of a possibility in the future and and it is in the back of my mind. Hope you don’t think I’m been silly.

Not silly at all. Forward plan! Imagine a scenario and work through it. Talk to someone about this, friends, family, neighbor. I never,ever have my mobile phone out of my reach.

Hi local councils offer a service (at a low cost per month) that provides either a pendant or wrist alarm that is connected to a phone line. If you fall you can press the alarm and the help centre can speak to you via the telephone which they provide. If you need assistance they can arrange for someone to come out to you or contact family. It requires leaving a door key with a trusted neighbour or family nearby or the council will arrange a key safe outside your property so that someone can come to your aid. Sue

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I use this service. For about £15 a month I know that whether I am on my own or not I have a “get out of jail option” should I fall and not be able to get up. So far I have not used it in anger but the piece of mind and the fact that my wife can go to work and be fairly confident that all is OKis worth every penny.

Mick

Our home phone has 4 handsets (with charging stands). I suggest one in each room. Make sure there’s always a charged handset in the bathroom as that tend to be the room that is least likely to have a phone in it.

And/or carry a mobile round with you? That way if you fall in a room without a phone in it, you still have access to the outside world.

These are modern day solutions to old problems.

Hopefully it won’t happen.

Sue

Thank you so much for your replies. It’s something that casually crossed my mind before dx, as it may casually cross all single people living alone, mhmm if I fell from the attic ladder how long would it take for someone to figure something wasn’t right. I thought work would be the first to know if I went AWOL, as friends and family would probably think, oh she’s out, try later. But ms brings a new reality I think. I hope that I’ll be well and it won’t come to it, but Poppy your experience really made me think. What a truly terrifying experience.