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Lumbar puncture help!

Went to see my neuro he said he’s 99% sure I have ms. I asked him if it could be a different neurological disease and he said he’s pretty sure all the evidence points to ms. To make sure he said I could have a lumbar puncture but even then he said it can give a false negative so he said it’s up to me. I said to book one and now it’s at the end of the month questions I have is .

  1. Will I be able to work the next day ?

  2. Do you think it’s worth doing? He’s 99% sure it’s ms bit I kinda don’t wanna get treated for the wrong disease as such! They already found something in my blood that points to ms. I guess I’m just pretty scared of having a needle in my back n wondering whether it’s worth going through if it’ll make much difference?

Hello

Have you got multiple demyelinating lesions in your brain and/or spine as seen on MRI? If so, and your neurologist is happy to diagnose MS without an LP, don’t have it. You could just write and get him to confirm it’s MS even outwith a positive LP. As he said, you can get a false negative LP. If only 80 to 95% of people with MS have O bands in their spinal fluid (but not in their blood), then up to 20% of people with MS don’t.

If you go ahead with the LP, then you might be OK to work the next day, it just depends on how you react to the LP. You can minimise the risk of the truly evil headache by laying down for as long as the hospital will let you (a minimum of an hour),plus drink full strength coke (for the caffeine and sugar) while you are laying down (take a bendy straw with you).

Some people do this and still get horrendous headaches, but it’s still worth doing. Admittedly, some people don’t know about the potential side effects, don’t lay down and don’t drink coke and are fine. (I was, but then I knew nothing about the tests, what they were looking for or side effects, then again it was 1997, this forum didn’t exist!)

Best of luck.

Sue

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Hi I had a LP in late January the doctor was great didn’t feel a thing, I was told to lay down for about an hour after it was done, I even went back home by public transport. I took my mum with me so that I wasn’t on my own. I then went to bed and stayed there for two days drinking a lot of coke. I got four bottles of it as I don’t drink coffee or tea very much. I didn’t get any headaches but it depends on how you feel I was a bit stiff on my back but other than that I had no problems. I think the doctor is covering everything just to make sure that he/she has got all the tests done, even though he/she thinks you have MS it’s just one more test to make sure. The needle is very fine they numb the area of the back first it’s a scratch really they will ask you if you want to be told what they are doing , mine asked if I would allow a student watching and to find where to put the needle, he didn’t do the LP. It was over very quickly they will give you a drink and a few biscuits afterwards, I had my cola. The worst part of the procedure was when they did my blood test I still have the bruise now and even that was alright. As for going back to work it’s up to how you feel you may only need to lie down after you get back from the hospital and feel ok but you may need a day off. I had it on a Thursday afternoon got back at 5pm then had something to eat and went to bed, I had booked off Friday and had the rest of the weekend to relax. You may not to be able to do that. They do say if you have the headache you just need to lie down to get rid of it as painkillers may or may not work, that’s why it’s a good idea caffeine and sugar to help, they do say that you have to have three litres of fluid a day for about a couple of days it’s to replace the fluid that they took which is not a lot, mines asked me what colour the fluid was, she said one person said it was purple, really it’s a light yellow colour she asked if I wanted to see the needle, even though I am alright with needles I said no. Good luck it’s not that bad. Kay

It’s meant to be on Wednesday I just don’t know if I want to go through with it because I’m proper scared haha! It wasn’t the neuros choice I suggested it he is happy to diagnose and start me on dmt’s without I just didn’t wanna be mid diagnosed with ms if it’s something else. I have multiple lesions on brain and 1 on spine.

Hi Bladaman

I know some people have no problem with a LP it can be uncomfortable but it still worth it as it will show if you MS. It also sounds that your neurologist is quite happy to diagnose you without it but I would go anyway. But make sure that you have bed rest when you come back home from the appointment and two days afterwards. You have to lie down for an hour after the treatment before you can go home.

I was really frightened about it but the doctors and nurses were wonderful. It is one more thing that will help towards a diagnosis. Best of luck Kay

When I had my LP, many years ago now, I had no advice to follow except for laying down for one hour afterwards.

All I felt was a small scratch as the area was numbed, the procedure was done behind me so obviously I saw nothing.

It took approx. 40mins for the fluid to be taken, then 1hr. laying down. Afterwards I had no headache or any side effects, just slightly sore where the needle was used. It really was, for me, slightly uncomfortable…nothing worse & I was back to normal soon after.

Not everyone has it so easy, maybe I was just really lucky, who knows?

Good luck for yours…if you decide to have it

Rosina

Blagaman

If you really don’t want to have the LP, don’t. Your neurologist knows what he is doing. What will you think if the LP is negative? Do you expect the diagnosis to change? I don’t. And neither does the neurologist. As far as he’s concerned, the presence of multiple lesions, together with your symptoms, history and physical examination have convinced him that you have MS. A positive LP isn’t going to change that, but neither would a negative LP.

Go for the LP if you feel that it will consolidate the diagnosis. As Kay and Rosina have said, it doesn’t hurt exactly. It’s a strange feeling, but not really painful. People seem to find the anaesthetic hurts more than the actual extraction of the fluid from the spine. And if you lay down as long as possible after, drink lots of caffeinated drinks, plus rest for the next couple of days, you should be OK.

Just be sure why you are putting yourself through the test. If it’s to add to the doubt that you have MS (and let’s face it, when told you have MS, the natural reaction is disbelief: ‘What do you mean MS? It can’t be! Not me!’) then you may achieve that, more likely it will confirm the diagnosis.

Best of luck.

Sue