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Aborted lumbar puncture

Hi everyone, my first post here…

Went for my LP on Wednesday after a 2 month wait.

When my neurologist said I would need one I told him I have a wedge fracture of my L1,2 and 3 vertebrae from 30 years ago, and asked if that would affect it? He said ‘no - they will go lower than that’.

So now, after about 10 attempts by 2 different doctors at getting the needle between my vertebrae with anaesthetic that didn’t work, they asked me ‘have you had any spinal problems before?’ When I told them about the wedge fracture they said there was no way they could get the needle in between the vertebrae and couldn’t go any lower…

I can’t believe my neurologist didn’t know this would be a problem and never even mentioned it in my referral letter, even though I made sure he knew about it…

Now I have to wait to see if he wants it done under x ray or just not bother, which will probably mean another 3 month wait, and even then no guarantee of a diagnosis.

My symptoms began 6 months ago now (foot drop, gradual increase weakness of my right arm and leg -MRI showed more than one lesion and white matter at the time, follow up MRI 4 months later showed reduction in size of the main lesion) So I’m wondering if CSF would still have any evidence of MS after this time with no other symptoms?

Sorry for the length of the post and thanks in advance for any replies…

Regards, Brian

Sorry to hear of your bad experience. My understanding is that LP neither rule in or out ms. Having said that if your CSF was positive for octagonal bands it’s suggestive of an inflammatory process in the Nervous system especially if no such banding in your bloods.

Part of the reason of doing a LP is to rule out other conditions.

If I understand correctly once you have multiple bands in your CSF you always will.

im not a medical professional, just what I’ve picked up on the way. Good Luck on your diagnosis journey.

You may what to look at the information on the MS Society websitei itself for a better explanation.

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Oh my goodness, poor you! In your shoes, I would bite the next person who suggested another lumbar puncture, but perhaps you are made of sterner stuff. Seriously though, I would need the neurologist to make a very strong case indeed before I considered letting them have another go. And even then, I’d probably tell him/her to stuff it.

My own LP was fine, and I wouldn’t hesitate to have another if I needed it, but with a recent record like yours I would probably decline unless it was a matter of life or death.

I am sorry you had such a horrid time.

Alison

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Thanks Alison, Must admit at the moment I’m not exactly keen to have them try again - will see how I feel when the bruising has gone :slight_smile:

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Hello Brian I’m with Alison, tell them to stuff trying for another LP. It’s a piece of the diagnostic puzzle that goes towards an MS diagnosis. But isn’t essential. 80-95% of people with confirmed MS have O bands in their CSF. But this means that up to 20% of people with MS either do not have O bands or have not had an LP. You can have MS definitively diagnosed without an LP. It would / could be based entirely on MRI scans, neurological exam, symptoms, maybe a VEP, another MRI scan, maybe with contrast, maybe of cervical spine, or whole spine as well as the brain. If your MRIs have shown your main lesion to have shrunk, and perhaps if your symptoms have improved, it could be diagnosed as CIS with a ‘watch and wait’ plan. Chatterbox is right that O bands, once present in the CSF, are always there. They don’t represent inflammatory action, so if you’d had them, they’d always be there. But the LP itself isn’t required. And in your case I would think it should be permanently off the table. Sue

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Thanks Sue,

Will have to wait and see what my neurologist wants to do next, I’m kind of expecting a CIS diagnosis - although my gp said that some of the bloods the neuro had done were positive. When I asked what they were she just said ‘you’ll have to speak to the neurologist about that’

Am seeing my neurologist in May and don’t expect any movement on the LP before that…

Brian

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Just a quick update,

Had the LP done today under x-ray guidance and it was absolutely fine - no pain and all done within 20 minutes, only thing is I had to put back my neuro appointment until June as it was due on Monday.

No headache either, just a slight tingling down my left side. Hopefully it will help with my diagnosis next month…

Regards, Brian

Thank you for letting us know, and bravo on the gritty resolve. I am glad that it was rewarded by an OK experience this time. Bet you’ll be ready for a glass or two this evening, and you’ve earned them!

Alison

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Good for you Brian. It’s a shame about your neuro appointment being put back, but at least the neurologist will have all the relevant information when you get your appointment.

Sue

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Thank you Sue + Alison, neurology appointment on Monday. So hopefully a diagnosis, one way or the other - like so many here I’m fed up with limbo land now!!

Regards, Brian

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Hi Brian

I’ll keep my fingers X’d for something definitive, one way or the other.

Let us know.

Sue

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Thanks Sue

Well, lumbar puncture was negative for ‘o’ bands and still no diagnosis…gotta have repeat bloods and another MRI to see if the lesions have further reduced.

He hasn’t ruled out MS, or another lumbar puncture in the future, So it looks like ‘wait and see’ …

He also mentioned the possibility of taking a biopsy with a needle to the brain! We both agreed that wasn’t worth the risk - I’m not that desperate to be diagnosed!!

Brian

I would have given that one a miss too!

Sorry that you are no forwarder, if that is the right thing to say given that certainty, in this context, can be so unappetizing . Looks like you need to dig in for a bit of waiting and seeing, as you say. Not ideal, and I’m sure it all feels deeply unsatisfactory, but the LP results are new information (and hard-won, too!) and that is always progress of a sort.

Alison

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Hi Brian

So all that arsing about re the LP was a waste of time, effort, worry and ultimately didn’t rule out MS, as we said before.

Damn.

Another LP would only be useful if they were looking for something else in the CSF. If the neurologist is still thinking MS, then a further LP wouldn’t change the result of the first one. You either have O bands or you don’t. And as I said before, up to 20% of people with MS have not tested positive for O bands. So it is still a possibility. Unfortunately.

Why do they bother with LPs? Especially for someone like you who had to have it under X-ray?

And as for a brain biopsy? I’d be tempted to take Alison’s advice about LPs earlier in the thread and bite the neurologist for even suggesting such a thing.

In your position, I’d do pretty much what you are doing, have the next MRI and see what’s happened with the lesions. Basically, the follow up MRI should be sufficient, together with the neurological exams to determine whether it’s MS or definitely not. It may not necessarily be sufficient to diagnose something different (basically I don’t know enough to suggest an alternate diagnosis) but he should be in a position to rule MS in or out.

And if he can’t, maybe he should be referring you to another neurologist. Is he an MS specialist?

While all this testing is going on, what is happening with the symptoms that took you to the neurologist in the first place? Are they staying the same, improving or getting worse? If the answer is that you are improving, then following the MRI, if MS still isn’t proven, I’d be tempted to wait 6 months then see what’s happened with the symptoms. If they’re getting worse, but MS is ruled out, then perhaps rethink the biopsy, but try to find out what the neuro thinks a biopsy might provide evidence of first.

All the best.

Sue

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Thanks again Alison + Sue,

He said it was possible the O bands hadn’t worked their way into the CSF yet (which sounded unlikely to me - considering the attack happened 9 months before the LP)

The symptoms, (foot drop. progressive weakness of right leg and right arm) got better after a few weeks (mainly due to an excellent physio) without any steroids and recovered to about 80/90% of how they were before. Since then they have remained the same, I have a slight limp and slightly reduced movement of my arm - but nothing that affects me too much, thankfully.

My neurologist doesn’t want to see me for another 6 months - guess I’ve just gotta get used to limboland for a while yet…

Regards, Brian

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I’m totally confused with regards to the significance of lp’s. My neurologist said he wouldn’t consider diagnosing MS in someone with a negative lumbar result. They have also been given more prominence in the revised criteria and the MS specialist at BARTS was saying at his latest conference that he believes people with negative lumbar punctures can’t have MS but that it’s another unidentifiable condition. Mixed messages from the professionals. I wish there was more consistency across the board. I was also told that repeated lp’s are needed if symptoms are ongoing with not other cause found as like you said above…you can go from negative to positive but not the other way round.

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Gammabri I think you are very brave going back for another LP after your previous experience and what a pain that despite you going through all that you still don’t have a definitive diagnosis/answer.I know I would never volunteer for another one, they had a lot of trouble getting mine (about 2 hours in all) I was just grateful that they managed it in the end!

I agree with the others that I certainly wouldn’t be signing up for someone to start digging around in my brain!

Hope you get some answers soon.

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Gamma bri, a serious back injury years ago eh, Rg500 accident by any chance? I baby sat someones 500 Gamma for about 3 months many years ago, such fun!

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Ha, Rg 500 - I wish!

I’ve only got the 250 sadly - but you’re right it was a motorbike accident, on a crappy little cb100n whose teflon coated tyres decided to dump me into the path of an oncoming taxi…At least the bloody thing was written off so I never had to ride it again :slight_smile:

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