OCB

[nm3874]

After a recent dx of trigeminal neuraliga I underwent a MRI showing white matter changes in and Round the ventricles.
. Underwent anLP that showed 2+ OCBs but serum test wasn't performed. A 2nd LP didn't show any OCBS in CSF or serum!  About a month separating the two tests. How could they just disappear like that. The same lab did both tests. Now they warn to test for CADASIL which I may decline.

[sllowe]

Hi Nm3874,

Wishing you a good, thorough appt. on Monday. While no-one wants to endure 2 LPs, yours was a classic example as to why it was necessary under those circumstances.

CADASIL is classic mimic of MS. I hope you know what you are dealing with very soon.

Let us know how you make out, and thank you for joining us!
-shell

[nm3874]

Thanks for your comments.  Both CSF samples were sent from CA to a lab in Utah.

I did have the genetic test done for CADASIL, but it takes about 3 weeks to come back.  I only did it for "completeness of diagnosis" not because I really really want to know, as there is little treatment, if any (ASA/Plavix are controversial) available.

The band issue is just so complex.  I see the neurologist on Monday and will try and get a more definitive answer from her.

[shoshin]

How awful that you had to have two LPs in a row like that because the lab messed up.

It is generally thought that OCBs in MS don't disappear; they just accumulate. However, this study (http://www.ncbi.nlm.nih.gov/pubmed/22185806) found that "Of the remaining 170 [who had a repeat LP] only 38 (22%) changed their OCB status, 30 from negative to positive and eight from positive to negative." So it seems that it is possible, unless those people happened to be mis-dx'd.

The other thing to keep in mind is that MS is not the only thing that causes OCBs in the CSF and the o-bands from many of those conditions can and do go away.

The actual OCB test usually seems to be sent away to a special lab so I'm not sure you can blame your local lab for the results. You're certainly entitled to blame them for failing to take your blood.

Tammy is right that you should investigate all possibilities. Hope you get some answers soon.

sho

[maxthecat43]

I just looked up Cadasil.  I think you should have that checked out, if there is even a remote possibility- but please find a different lab!  I wouldn't trust them.

Tammy

[maxthecat43]

That is odd.  It's my understanding that OCB's, once present- don't go away.  I don't have any.  I'm not familiar with CADASIL.  I think I would try to get my tests done somewhere else though.  It sounds like they are not doing their job well.  Your doctor can write a order for the tests, and let you take it somewhere else.  They don't like to, but that's their problem, not yours.

I wouldn't trust them to do this new test correctly.  There must be other options...

Let us know what happens, okay?
Tammy