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Do I really need a lumbar puncture?

Hello all. I’ve just had an MS diagnosis from a Neurologist, on the basis of symptom history and an MRI.

The neurologist was fairly certain of his diagnosis, to the extent that he has referred me to an MS nurse team for treatment.

I did however query this, and asked if this happened to be a misdiagnosis, what else could it be? He has therefore also sent me for a lumbar puncture.

I’m not really clear whether the risks and discomfort of a lumbar puncture are worthwhile, given that it won’t make much difference knowing for sure or knowing with high likelihood and getting modifying treatment on that basis anyway.

So, two questions: did your MS diagnosis require a lumbar puncture? And, how concerned should I be about the discomfort and danger associated with a lumber puncture procedure?

Thanks for any advice you can share.

I was diagnosed based on clinical observations;my history;a brain and cervical mri and finally a lumbar puncture. I won’t lie it wasn’t the most fun I have ever had (mainly uncomfortable having to stay still for so long rather than painful) and I would not have another unless it was absolutely necessary. That being said it was the final piece of the jigsaw that led to my diagnosis so it was worth it,

I suppose if you need to do this for your own piece of mind you should do it but remember not everyone that MS has oligoclonal bands (I think it is about 85%) in their CSF so it may not confirm anything and you may have gone through it for nothing.

Good Luck whatever you decide.

My diagnosis was from a MRI and Lumbar Puncture. Without them I would still be in Limbo.

I was diagnosed by clinical examination, my history and a mri of brain, cervical and spine. I declined a lumbar puncture as my neurologist told me this test cannot confirm diagnosis on its own but is used to rule out other illnesses. Had my mri not confirmed diagnosis I would have reconsidered. My neurologist also said he does not recommend such an invasive test unless absolutely necessary. Sue

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I was told by my ms specialist that an lp is important and has been given more prominence in the diagnostic process. My view is if you are offered one and are in limbo then it makes obvious sense to have it done. If you are already confirmed ms without having had one then there is no point. It’s a quick straightforward procedure which assuming you don’t go jumping about straight after, has very few side effects. If it’s offered, it’s offered for a reason!!

hiya

no wonder we get confused as neuros can agree!

i never had a lp-such an invasive procedure is only part of the jigsaw as sue84 said. i am glad that my neuro and i are on same wavelength but that only by luck sadly.

take care, ellie

I was diagnosed a few years back with RRMS based on clinical and MRI tests. Was never offered a Lumbar puncture and it sounds they are best avoided. But do folk think a Lumbar Puncture is essential to ensure RRMS is confirmed. Thanks in advance.

Hello Em

No, an LP isn’t required for diagnosis. Generally MRI plus history and clinical exam are all that’s essential. But, if your neurologist diagnosed on the grounds of MRI and clinical exam, but you questioned the diagnosis, then all s/he could do was suggest an LP.

If you’re happy with the diagnosis as it is, then don’t have the LP. It sounds like the neuro is fairly confident on the evidence already collected. And a lumbar puncture is fairly invasive.

But if you’re still wondering if MS is the correct diagnosis then have the LP. Just remember that only 80 to 95% of people with MS have Oligoclonal bands in their CFS, so you could have the LP, be negative for O bands and your neurologist would still have diagnosed you as having MS.

Sue

Hey, I was told by the neurologist I have ms. So was confused when I had a letter saying suspected after I had my mri with lesions on the brain. I had to have a lumbure puncture and I am still waiting on results. I think it just confirms everything. Also my lumbure puncture went as well as it could. They were lovely they numb the area first all I could feel was when the needle went in deeper however it was more uncomfortable than pain. And I don’t have to lay down after either as soon as it was done I was up and out. To get a diagnosis I would say go for it the more proof the better. Amy x

I absolutely agree with Amy. My neuro told me he wouldn’t consider diagnosing someone with ms without a lumbar puncture. There is only a very small chance that someone with ms won’t have evidence from lp. My neuro said 9 out of every 10 people with clinically certain ms display o bands in lumbar result so whilst no test is definite it certainly adds a considerable amount of weight and certainty to a diagnosis and if after having an mri there is doubt about diagnosis still, the lumbar can sway the result either way. Also agree it really isn’t a big deal. Mine took 20 minutes and was up and about after. I’d sooner have another one of those then a filling at the dentist. Some people don’t get offered one so if you have been, take them up on it.

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Thank you to everyone for your really helpful replies. Having read them, and a few other threads on this (really useful) website, I’ve decided to avoid the LP for now. I’ll be seeing an MS nurse team next month anyway, given my diagnosis was made without need for LP. If it isn’t MS, likely candidates would be something like Lupus, and there are no real treatments for that anyway I believe, so why worry? I’ll see what unfolds. Thanks again.