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Likely MS but CSF negative for oligoclonal bands?

Finally had appointment with neuro to discuss implications of lumbar puncture findings.

I was told he had expected to give me a RRMS diagnosis but my CSF was negative for ‘everything’ so instead we need to wait and see if more lesions appear. Has anyone else had a diagnosis despite a negative lumbar puncture?

My current lesions are apparently typical for MS and symptoms are “convincing” but it’s not enough hard data to be safe, so I will have more MRIs in about six months to check for changes.

Back to limbo land…

The lumbar puncture is a contentious issue. My lumbar puncture was also negative and my neurologist (specialist at Hospital for Neurology) said he wouldn’t consider for a second diagnosing someone with a negative lumbar puncture result and further on from that, wouldn’t diagnose someone without them having had the lumbar puncture done. Also, there is a very well known neurologist who specialises in MS and works out of Barts Hospital (many will know who I’m talking about without me needing to name him) who believes it’s impossible to have MS with a clear lumbar puncture because a clear lumbar puncture means there is no inflammation. Check out the barts blog if you want to read what he thinks. However, there will absolutely be people on here who have been diagnosed by neurologists with a negative lumbar result. The lumbar puncture has been given more prominence in the revised 2017 criteria for diagnosis too. I still have neuro symptoms and I can’t dismiss MS as a potential diagnosis despite what my neurologist himself and other prominent neurologists believe. It’s a tricky one. Hopefully your repeat mri’s will help to give a clearer picture of what’s happening.

Thanks very much for your thoughtful reply.

Hello Harebell

Have a look at https://www.mstrust.org.uk/a-z/lumbar-puncture

The MS Trust are generally a pretty reliable source of information. They state that approximately 80 to 95% of people with MS have Oligoclonal bands in their CSF. This means that at least 5% of people with MS have tested negative for O bands.

What neurologists use is the McDonald Criteria to diagnose MS. LP is part of the diagnosis, but MRI plus clinical evidence of relapses is a much bigger part of the diagnosis. Have a look at https://www.mstrust.org.uk/a-z/mcdonald-criteria

So what your neurologist is doing is looking for evidence of demyelinating lesions separated in time and space. That’s why you will have another MRI in 6 months. In the meantime, start keeping a diary of symptoms. Note how long any symptom lasts, whether it’s new or a repeat of an old symptom. You should also note whether symptoms completely disappear or stay with you. You can reduce this diary to a more basic timeline for the next time you see the neurologist.

Best of luck in the meantime. You can of course keep asking us questions while you wait. If we can help, we will.

Sue

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Thanks Sue x

Hi there Harebell,

I recognise your situation. After testing negative on LP, I went on to receive a diagnosis about six months later when a relapse increased my lesion count on MRI.

My neuro had told me from the beginning that he thought I had MS, based on medical history and EVP results (Evoked Potential), but he explained that he had to meet the diagnostic criteria.

It’s a frustrating situation, so I understand just how you’re feeling.

There have been discussions on this topic before, and I know I’m not the only MSer here with a negative LP, but we are certainly a minority.

Ben

Hello all. I’m back once again. I was last here about 5 years ago. I was diagnosed with migraines despite having lesions and brain damage from a biological drug. I’m waiting again now as every year I’ve had a relapse and this one is the worst. I’ve had seizures , about 4? Can’t remember. So I presume a new MRI will show new lesions and get my diagnosis as it’s been 6 years since my last MRI…long enough!

Hi Ben,

Thanks for your reply; I’m sorry I only saw it this morning.

Hearing of your experience is helpful so thank you for telling me about it.

best wishes

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