Spinal Tap

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Spinal Tap

Postby gwenyp » Tue Jun 16, 2015 9:20 am

Hello, all! I hope this post finds you feeling well.

I have a neuro who suspects I may have MS. I have several symptoms that line up with a diagnosis of MS, but I have atypical lesions on my brain MRI, and recently had a cervical/lumbar spine MRI which I was told was clear. Now she wants to do a spinal tap. My main question is: how often does MS show up in a spinal tap? I'm a little freaked out about the procedure. Is a spinal tap more telling than an MRI?

Thanks for taking the time to read my post!

Jenn,
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Re: Spinal Tap

Postby lyndacarol » Tue Jun 16, 2015 10:54 am

gwenyp wrote:Hello, all! I hope this post finds you feeling well.

I have a neuro who suspects I may have MS. I have several symptoms that line up with a diagnosis of MS, but I have atypical lesions on my brain MRI, and recently had a cervical/lumbar spine MRI which I was told was clear. Now she wants to do a spinal tap. My main question is: how often does MS show up in a spinal tap? I'm a little freaked out about the procedure. Is a spinal tap more telling than an MRI?

Thanks for taking the time to read my post!

Jenn,
Hello and welcome to ThisIsMS, Jenn (gwenyp).

There is no definitive test or imaging for MS. MS is a diagnosis of exclusion, made after the other likely possibilities have been ruled out. Many people diagnosed with MS, including me, have never had a spinal tap (a.k.a. lumbar puncture).

Lesions on the brain MRI do not "prove" MS; lesions are found with many other conditions, such as migraines, vitamin B12 deficiency, etc.. Even oligoclonal bands (O-bands), which might be found in the spinal fluid, are not exclusive to MS either, but can also be found in other conditions.

If your neuro orders a spinal tap, ask that the vitamin B12 level in the fluid be measured also. Request your own copy of any test results. (I assume she has not already thoroughly screened for B12 deficiency. The "serum B12" alone is not adequate to identify a deficiency.)

The CSF can be tested for B12; if they are in there already, why not test?
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Re: Spinal Tap

Postby gwenyp » Tue Jun 16, 2015 11:12 am

Thanks, lyndacarol! I'll be sure to ask her about checking the B12.
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Re: Spinal Tap

Postby katfish » Mon Jun 22, 2015 12:49 am

I started with symptoms at the beginning of the year but had migraines also. I had my first mri in march that was suspicious for ms. My neuro got the migraines under control but the numbness and confusion persisted. More new symptoms came. My spinal mri was clear. The last symptom before the lumbar puncture was the dizziness. During all this time I got tested and ruled out for multiple vitamin deficiencies, lyme disease, lupus, etc. You name it, I was tested for it. In the end I did the lumbar puncture. I'm glad I did. My csf came back all out of normal. I was diagnosed with ms and started on tecfidera 4 days ago. So far so good.
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Re: Spinal Tap

Postby gwenyp » Wed Jun 24, 2015 10:12 pm

Thanks, katfish. Maybe this will provide some much-needed answers for me. I was scared, but I am home healing from the procedure now. It was unpleasant, and I'm worried I may need to go back for a blood patch. If it provides a solid diagnosis, it will be worth it, I suppose. I'm terribly sorry you had to go through this as well. *Sending healing vibes and good luck to you*
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