Negative CSF with MS dx: Anyone else have... - My MSAA Community

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Negative CSF with MS dx

tenessa24 profile image
12 Replies

Anyone else have negative CSF, but diagnosed with MS because of MRI and “relapses”? I know CSF reliance is a bit “old school” for diagnosis, but I’m just curious if there are others in my situation.

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tenessa24 profile image
tenessa24
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12 Replies
greaterexp profile image
greaterexp

Yes. I had a CSF analysis about 20 years ago after having symptoms (CIS?) The CSF was still negative, but the MRI showed multiple lesions this time.

tenessa24 profile image
tenessa24 in reply togreaterexp

My symptoms and MRI lesions are how I was diagnosed. I’ve had CSF done twice (I was hospitalized for relapses both times) all negative. Happy to hear I’m not alone. 🙂

Morllyn profile image
Morllyn

My CSF was negative, many years ago but was diagnosed with MS due to symptoms and lesions.

ssdw1958 profile image
ssdw1958

No I am not in your boat I am in the boat in which that was one of the ways I was diagnosed with a spinal tap. I am writing this for the ones don’t know what to do if they are not sure if they have MS that a spinal tap is another way to find out if they have MS.

One thing I have to say if you ever have one a spinal tap don’t move fast or bend down just lay down flat

tenessa24 profile image
tenessa24 in reply tossdw1958

I’ve had TWO! The first one I got a spinal headache after and had to have a blood-patch. Terrifying!

erash profile image
erash

My CSF was negative and MRI was very positive tenessa24

I believe many others here had the same

tenessa24 profile image
tenessa24 in reply toerash

Thank you. MS is so “unique”. I think we all repeatedly question our diagnoses whether it’s denial or the noise from outside “critics”

Jozzi profile image
Jozzi in reply totenessa24

So TRUE!! God said by his stripes we were healed! Its already done everyone. We are believing God for the manifestation!! DON'T LOSE YOUR FAITH!!

StacyHayward profile image
StacyHayward

Spinal negative and mri inconclusive

dianekjs profile image
dianekjs

Yep, CSF was negative for MS, but lesions in both the spinal cord and brain look quite classic. My onset and symptoms are less typical, but I was diagnosed with PPMS this spring. They did note that there was some uncertainty due to some atypical features. However, my MS specialist said that if you put my MRI scans up on a screen in an auditorium of 100 neurologists, 98 would say "of course, that's MS." Then he said if they were then told the case history and clinical picture 20 or so more would probably hesitate to make the diagnosis.

pmbevac profile image
pmbevac

I had a negative CSF as well.. but diagnosed based on symptom history and MRI results

kdali profile image
kdali

I've never had a spinal tap.

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