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Advice re lumbar puncture

Hello Any advice welcome. I’ve experienced symptoms which could indicate MS for over 12 years. Ivestagations 11years ago consisted of bloods & nerve conduction studies - which proved negative. Those first symptoms eventually subsided & although I experienced them several times in the following years nothing as bad as the initial episode. Then just over a year ago the symptoms returned which made me want to get advice & help & I saw a GP. He referred me to a neurologist. I’ve had a MRI which in the consultant’s opinion shows extensive changes indicating small vessel changes. He has said another neurologist could disagree with him. I experience no cardio vascular risk factors which he said are associated with SVD . Recent nerve conduction studies have proved negative. The consultant has offered me a Lumbar Puncture yet it’s my decision. I really don’t know if to go ahead as the consultant is convinced I do not have MS , although as previously said another neurologist could disagree. Any thoughts would be very much appreciated. Many Thanks Mobo Apologies for any errors as I’ve not used this forum before.

Hello Mobo

No errors in your post.

If you’ve had an MRI which showed no demyelinating lesions, then the neurologist could be right in saying that you don’t have MS. Although if you’ve only had a brain MRI and not the spine, it’s possible there could be lesions, just not in the brain.

A lumbar puncture on its own can’t be used to diagnose MS. 80 to 95% of people with MS have been found to have Oligoclonal bands in their CSF which is found by LP. However, that means up to 20% of people with MS don’t have O bands in their CSF or maybe haven’t had their CSF tested by LP.

It might be worth having the LP. If you did have O bands, then you could request a further MRI, including the spine as well as the brain, and maybe an Evoked Potentials test too. If you don’t have O bands, although it’s not a definitive answer, it lends weight to the neurologist believing that it’s not MS.

Having had a quite scan through info about small vessel disorder, I don’t think it always involves the heart. Not that I’m any kind of expert though.

Or of course, you could ask for another neurologist to review the MRI findings.

Sue

Hello, just to say if you do go for the lumber puncture make sure you drink plenty of fluids and water and coke are recommended. When you have a lumber puncture they also test your csf for other things as well as the o bands. Good luck in whatever you decide.

don’t forget to take a bendy straw with you because if you are trying to drink your way through a litre bottle of coke, whilst lying flat, the bed could end up soaked.

it’s the caffeine that helps, or so they say.

insist that you are left to lie flat for at least an hour which reduces the risk of the headache from hell.

And it should be fat coke, not diet. The sugar helps as well as the caffeine. The point is to avoid the ‘headache from hell’. Not everyone gets it, even if they don’t drink caffeine laden drinks.

Sue

i didn’t get a headache at all.

kept expecting it on day 3.

in the early hours of day 4 i woke up vomiting a strange looking vomit like what cats do.

my wonderful gp said it was a reaction to having my spinal fluid taken and gave me diazepam so i could sleep it off.

i’m reluctant to talk about it on this forum in case i set someone off worrying.

i don’t know if it was a reaction to having my spinal fluid taken but i appreciated the diazepam and the sleep.

Are you sure you weren’t just vomiting because you’d been eating grass and twigs, Ms Catwoman?

Maybe you had a furball?

But seriously, I didn’t know about the fat coke and laying down for an hour thing. In 1997, this forum didn’t exist. And I didn’t know I was even being tested for MS (totally oblivious and knew the sum total of zero about MS, LPs and the rest). But I didn’t even get a bit of a headache that I can remember. I only remember what it felt like having that needle sliding in to my spine. I don’t think they bothered with anything like anaesthetic in those days in the grim surroundings of the London Hospital. All I remember is vague thoughts about Jack the Ripper in the Victorian surroundings with all kinds of nutters on the ward.

In these modern times we have so many newfangled things like numbing gel, anaesthesia, more than just a burly nurse to hold your hand! Not to mention the internet and all of us lot.

Sue

Hi Many thanks for taking the time to reply - much appreciated. I did have MRI cervical spine which was ok, my brain MRI was the problem. However I’m not sure of the excate report , after the neurologist verbally gave me the results I did ask for a copy of the written report, yet was only sent the summery, which doesn’t give much detail. The neurologist confused me by saying another consultant could disagree with his opinion. Sadly on my first appointment with him he came across very arrogant & on reflection very rude. Yet on my second visit he was a little more appropriate but he did have a medical student with him. This is when he said his opinion could be challenged. I think I will go ahead with the L.P. & will take on board all your advice. My brother has PPMS ( diagnosed after my first symptoms began) & has told me his experience of the L.P.! Many thanks Mo

I had a terrible headache 2 or 3 days after the LP that lasted about a week or so. If I sat up I got a cracking headache that pills couldn’t shift. I lay down flat and within 30 secs the headache went. Spent the week lying down watching TV, or sunbathing in the back garden.

I wasn’t told about fat coke either (wish I had though). Although my sister-in-law (from New Zealand) told me that her Dr advised taking all pills (paracetamol etc) with full fat coke, as apparently the caffeine in the drink helps your body absorb the drugs quicker so they start working faster.

Kedge

My LP was ok, the only issue is when they did not give me enough local and hit a nerve somewhere, what a pain that was. Was a bit sore the next day, but drank loads of coke and coffee and managed to escape the dreaded headache. I think (apart from hitting the nerve) the most pain was actually from the local going in.

Definitely get the LP, the more evidence you have can only help strengthen a diagnosis either way.