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Lumber puncture

Hi everyone. I’m Newly diagnosed and it’s been a whirl wind of info and tests. The docs here in Scotland have been fantastic but sometimes I’d like to get off this merry go round. I’ve been poked and prodded from head to foot, scanned (mri) what feels like a million times. I think me and my family are still in shock with it all.

spent yesterday in hospital for more mri scans only to be told I have to go back for more in a week or two. I also had a lumber puncture which didn’t go well. The doc spent half an hour trying before getting his boss who did it straight away. Needless to say I’m home now but my back is black and blue and I can hardly move. But thankfully I’ve no headache yet.

Hi Lizbeth,

Welcome to the club! You’re LP sounds hideous, mine was too, almost passed out, the pain/uncomfortableness was nearly unbearable, I wouldn’t wish one on my worst enemy. We must be the unlucky ones because other people seem to breeze through it with no issues at all.

Make sure you have an MS nurse, if for nothing else to talk to. The roller coaster of emotions and hoops to jump through is mind boggling following a diagnosis and an MS nurse will be able to spoon feed you through it and point you in the best directions for help. I don’t know how I would have coped without mine, somehow for sure but they can answer questions and have an understanding that you may not get from family or friends.

I’ve only been diagnosed 6 months and am still riding the roller coaster, though it has slowed down a bit and I’m becoming more accepting of help and adaptions I’m having to swallow to make my life a bit easier. My pride has got a bit in the way.

Of course, always use this forum as a support network, you will get some fantastic advice from caring people who have an understanding of what you are going through.

Nikki

Hi there Lizbeth,

Welcome to the forum. I’m sorry to read you have had such a difficult LP, but I hope you won’t mind me pointing out, for the benefit of anyone reading this who is awaiting an LP, that not all LPs are like that. Mine was pain free and quite straightforward, however, I did get the headache, but I was home by then so had it in the comfort of my own bed.

You’ll find a lot of good info on this site, and also on the MS Trust site.

I hope things ease up a bit soon.

Ben

hi lizbeth

my LP went well and i didnt have a headache.

however a few days later i woke up vomiting and it lasted ages.

my lovely GP explained that some people can have a reaction to having their spinal fluid taken.

he said that i needed to be anaethetised so prescribed diazepam to knock me out.

carole x

Thanks guys. I didn’t mean to scare anyone who is waiting for a LP. Once the second doc came in and tried, it went smoothly and pain free. I think the 1st doc was struggling and should of give up sooner than he did, we’ve all got to learn I just wish it wasn’t on my spine. And I must point out that he had done 4 that day before mine and they all went well.

I have a lovely black and blue back on top of everything else. My problem are all in my hips and legs so it’s come as a great shock to go from being in good health and charging around after 4 kids to suddenly not being able to walk very well. The learning curve has been massive and this forum has been a great help

Hi pps,my L/P went ok but a couple days after I got the dreaded headaches! They weren’t too bad either. I found just take it real easy for about a week after. You’ll know yourself when you feel 100%. Laying flat out in a dark quiet room helps also. Again everyone’s different,but you’ll know yourself. Terry x

I hardly liked to say before, but my L/P was just to confirm the diagnosis, and I swore I’d never have another one! I reacted very badly to it and spent a week vomiting every time I got vertical… in the end it was easier to stay in bed or lay flat out on the sofa. Keep up regular painkillers and take it easy for as long as you can afterwards, and it should be fine…but do listen to what your body is telling you. If you don’t, it may kick up a fuss…

It’s a hard one to say. I didn’t want to put people off having it done. I have to look at it as being a means to an end. If it helps to get a correct diagnoses then I’ll do it. Needless to say I’m taking lots of painkillers and rest

You really don’t want it to be trainee day at the lumbar puncturist’s, do you? I am sorry that you had a horrid time.

I am not sure whether I would have had the courage to ask how many LPs the doc had done before (in my case, I knew the answer would be ‘very many’, so the question did not arise) but I would advise anyone to gather up their courage and insist on an experienced person before some have-a-go beginner had a crack at it. Also, if said beginner didn’t know when he/she was beat… Lord, poor you! I expect the nurses were furious, and the senior doc too, most likely. Lessons will have been learned, I expect, but I am sorry they were learned on you.

Alison

Mine was quite funny, the so called experienced doctor who was showing the trainee how to do it tried three times but couldn’t get any fluid. Even went as far as to ask me if I had arthritis. Then he let the trainee have a go and she got it in one. I didn’t have a headache or anything but did go to bed as I was so tired.

i think I would be a wee bit apprehensive if I had to have another but I would still go through with it.

Mags xx