Hi I seen my neurologist today got a phone call this morning as there was a cancellation. To cut a long story short he believes I have ms with MRI and symptoms but now wants me to have an LP. I am more scared of having this procedure than having ms tbh! Any advise or experiences would be greatly appreciated. It’s just that I live miles away from hospital and have read about lying flat etc. which would be impossible and I don’t want further complications to ones I already have.
Thanks
Sorry meant to send you a message on hear but I went to wrong place and sent you a PM
Hi
My LP was done with me sitting on the side of a bed whilst playing ‘cribbage’ on my iPad. Sitting up was more comfortable for me and doing something to try to take my mind off of it seemed to help.
I wish you all the best.
Coco floyd,
I had my LP in 1991 and I can still remember the fear that I had. A relative had scared the heck out of me with her stories from the 1930s.
It did not help that the person performing the procedure looked like he had been out all night partying. I can (as a world class wimp) in all honesty say that I felt nothing other than pressure. I had however crushed the pillow between my knees to the thickness of atoms.
I wish you all the best and hope that your lumbar puncture is as comfortable as mine was.
Good luck Mick
Thanks everyone for advice and kind replies. I really do appreciate it! My not scared of needles or anything it’s just all the horror stories you hear of.
Best Wishes
Kellyann
At the risk of sounding controversial, could you push back against needing one? My understanding is that a positive result is neither necessary nor sufficient for an MS diagnosis under the MacDonald diagnostic criteria (which focuses on lesions disseminated in space and time) (and that lumber puncture results just provide supporting evidence)? My diagnosis this year was made purely on the basis of MRI evidence. Scan 1 (March 16) showed dissemination in space through the location of the lesions on my brain/ spine/brain stem and dissemination in time as I had both “enhanced” active lesions and old lesions showing on the same scan. A second scan in June 16 showed one new lesions and this was sufficient to label me with “active” RRMS to qualify me for Lemtrada (which I start Monday).
I know different hospitals/ Neuros have different practices, and that it may be less obviously “brain like Swiss cheese” scan results may require supporting evidence (and would have been prepared for a LP on the advice of my Mrs team of needed) - but thought it was worth mentioning in case helpful xx
Hi I agree with Katy79. I was also a bit worried about having an LP and mentioned it in passing to my neurologist. For some reason and happily so, I am now on treatment and a LP has not been mentioned again.
I quite enjoyed mine. You only have to lie down (with a pillow) for an hour or so afterwards, and after that you can sit propped up. I had no problems afterwards at all, although I was still very unwell because of my TM so I was mostly in bed anyway for two days. Honestly, removing the plaster was the worst bit 
I did drink lots of fluids birth before and after, and I mean lots.
Like you, I wasn’t worried about the needle as such, but about all the practicalities surrounding it. Why is it that lying down is a problem for you? It was the bit I was most worried about, but there was no need at all.
It does allow them to collect more info about your condition and it is possible that could help you get more appropriate treatment. I haven’t had my results yet.
Anything else I can tell you?
Also, I live a long way from the hospital too, it wasn’t a problem being in the car for the journey home. If you need someone to take you, there is probably a volunteer car scheme near you that could take you.
Hi everyone, I’ve not been ignorant just having problems with website on my phone trying to reply! Katy79 everything you’ve said is my understanding too through research over past few months. My main concern is nothing will show then I’ve went through yet another anxious time for nothing. Neurologist even admitted the scanner that was used was one of the older ones, also there was no contrast used. I just think this procedure is to save money in my opinion. The reason I’m so against it is the thought of being sent on my way after an hour to travel for two hours upright and then due to when I live, my home is a mile up a very potholed dirt road and its bad enough coming up it on a good day never mind after that, i just think it would be dangerous jiggling up and down having fluid leaking all over the place. Also i’ve only just recently after two years got relief from nerve damage from lower back and really just feel i don’t want to risk that level of pain again, a headache for a few days is nothing i know but that nerve pain near drove me insane! I’ve decided now not to have it don’t know how neurologist is going to feel now after I agreed but after having a few days to think/cry about it I’ll take his wrath lol.
Thanks again for everyone help and advice and best wishes,
Kellyann
Kellyann,
Even if the neurologist is irritated they should understand that they are dealing with “people” and we all have different feelings and responses which need to be respected. If you feel that a LP is not for you for whatever reason that is fine. They might try to persuade you but they should not put pressure on you and you should feel comfortable about your choices.
Good luck
Mick
I was really, really worried. I let them know and a doctor from the hospital rang me and answered every single one of my concerns in great detail before I went in.
Let your neurologist know you have concerns (which are absolutely legitimate) and ask to discuss it with someone. Mine were the same as yours.
I was always going to go ahead with the LP because, although I have had symptoms for 16 years, my MRI scans of full spine and brain showed the new neck lesion, but neuro said brain not typical of MS. I know that treatment for MS can accelerate and exacerbate conditions such as NMO and Sjorgrens, and I suppose there is a minuscule possibility that I have some sort of CNS infection so I really want the neuro to have as much info as possible before making his diagnosis and discussing treatment.
If I had a brain MRI typical of MS, I’m not sure if I would have gone ahead, but now I’ve had one LP I’d go back and have another with no qualms whatsoever. I am someone who avoids the dentist because of worries about how it affects my long standing neck condition.
Whatever you decide, please don’t worry about what people think about your decision. Push for as much info as possible, then trust your instinct.
Like you I was dreading it. The procedure was fairly straightforward and much less painful than I had thought. I am told that Mt reaction after was somewhat unusual. The following day I developed the headache from he’ll and NOTHING would shift it. I was even given Tramadol + Paracetamol/Ibruprofen and it made absolutely no difference. If I laid flat I wasn’t too bad but second I raised my head it felt like a steamroller going over my head really slowly. I think I have a fairly high pain threshold - I gave birth with no pain relief - but I would do that 5 times over than have that pain. Just be prepared to not move for 7 days!
Hello 
I wasn’t expecting the lumber puncture at all they just turned up to my hospital room and went for it … It wasn’t bad.well, wasn’t the worst part of my ms journey to date or even close , and I’ve been relatively calm. “Fake it till you make it” pretend your ok with it and you’ll get through it I promise it’s a scary time. But you’ll get through xx
I was scared too, but it was fine. I didn’t have to have it to get a dx (and neither do you, most likely) but my neurologist preferred his newly dx patients to have as detailed as possible a baseline on file to start off with, so I said OK. It didn’t hurt and was a bit of an anti-climax really after all the worrying. I was made to lie flat for a couple of hours before driving myself home to a stiff gin that I didn’t really need but was looking forward to! I had booked the next day as leave just in case, but actually I would have been fine to go into work if I had felt like it. No headache or anything else.
Good luck with yours.
Alison
What test results have you had back positive for MS?
Do not have the LP. I did have one and the results totally muddied the waters. If i hadnt had one i might not have had to wait 10 years to be finally diagnosed.
The stupid thing is mine had O bands, but the blood test alongside the LP showed inflammation which makes the LP negative for MS but does not mean i dont have it, just that the blood showed something going on elsewhere so its negative result.
In the end i got it through a macDonald criteria, but it took 10 years and a good neurolgoist to stick with me until the end.
The procedure is very hard on your body. I would not want to travel far afterwards.
I was in bed for 2 weeks after mine, although I never felt the actual procedure nor did i get the headache, the aftermath was purely through the stress which made me ill.
The inflammation in my blood turned out to be eventually a co infection of LYMES disease… which screwed up the MS results.
I dont need a LP to get a diagnosis of MS.
Actually my neuro now doesnt offer them, he said they are a waste of time for MS diagnosis, wish he had said that prior to me having one lol…but he learnt a lot from my symptoms and it made him realise not everyone is the same with MS.
Hi there
i don’t know how I didn’t see your post thanks for your advice. I’ve decided not to have LP just waiting on what neuro has to say (called his secretary last week).
I’ve been having symptoms on/off for over 13 years (first happened when I was pregnant, hospital for 3 days but could t do MRI) Evoked potentials showed slowed right side of brain or something can’t really remember lol was told migraine aura so everytime I went numb, vision probs over the years I just put it down to that! Over the past 3 years I’ve got a lot worse stiffness, spasms etc I’ve not been able to work and was passed pillar to post in NHS seen probably every consultant there is. Then finally refered to neuro couple of months ago MRI showed approx 12 small lesions on brain nothing on cervical spine but machine was old and no contrast although I think he could use the McDonald criteria as I fit every part of it. It’s just he says the DMDs are dangerous and didn’t want to start me on them unless he was definite it was ms and not mini strokes etc. He’s took another load of blood last week but over the years NHS has done all this for RA, HIV, Lyme all the mimics that could show lesions on MRI.
Thanks again
I went blind twice in 2000. EVENTUALLY after evoked potential test they found I had ON bilterally in both eyes. One side left was slower then right. Still nothing. MRI showed 3 different lesions over time. I started to feel like giving up but i knew it was MS. The neuro stuck with me.
FINALLY after another evoked potential test showed positive results again for ON and all the stuff in between (I call it the sandwhich), he gave me the diagnosis.
So dont give up. MS can be triggered during or after pregnancy.
I think your neuro is being sensible to be honest. IF it is MS it isnt going anywhere, and will eventually show itself which i kept telling myself, and it did, it never let me down lol. xxxxxx
Exactly I’m not in a hurry now for diagnosis tbh if it is ms it’s being hanging around for 13 yrs another couple months aren’t going to make much difference I’m out in garden enjoying weather & cutting grass I know I’ll suffer later but hey ho I live in Scotland we only get 2 days of summer haha xx
Thats the way to deal with it. If it is it will soon show up i just stopped worrying about it, and it was just on a routine visit to my neuro and he decided to check my eyes and did one of those number with colour card thingys and he said humm your one eye is a bit slow, so I had a VEP test, which confirmed it and ON, and finally i got the diagnosis. It was so odd as i literally had given up worrying about it lol. Such a shock when he called me back a few weeks later and gave me the news.
Its made no difference whatsoever to me to be honest, i am so used to dealing with it, i just get on with it lol. I bought bantam chickens, my doctor told me keep on your legs so i do, and they get me up every day, even when i am so desperate to stay in bed lol. Its really helped having a hobby. The weather here is fab. xx