CSF Positive for Oligoclonal Bands in the Past, Negative Now?

[aytpicalsymptom]

Hello all,

Since my last post here, I have gotten some more information about my condition. Specifically, the eye issue that prompted the initial investigation of my symptoms has been diagnosed by a retinal specialist as a very rare eye disorder. Aside from visual disturbances, I have no neurological symptoms.

The MRI that was taken to help diagnose my strange visual symptoms showed "nonspecific" white matter hyperintensities possibly suggestive of demyelination in the brain only, not the spinal cord. These were "periventricular" and "subcortical" according to the report. There were no enhancing lesions on the scan. I was referred to a neurologist, who ordered further testing. I just got back the results of an LP and VEP, which are both normal. All of my lab results (bloodwork) are normal.

Nevertheless, the neurologist strongly believes on the basis of the MRI that I already have (or will soon have) MS. He believes that the MRI, in his experience, very much looks like the MRI of an MS patient.

However, one thing he said really confused me. He said that my CSF was probably positive for oligoclonal bands in the past, but negative now, because I don't have any active inflammation. He said that oligoclonal bands can come and go, and are typically only present during active inflammation. This is not the impression I have gotten from my independent reading. Could anyone please refer me to a reputable source that can either confirm or deny this? A research paper, for instance, would be great. I really appreciate all of your help and advice.

And yes, I want to get a second opinion from an MS specialist, but that is easier said than done around here (and with my particular insurance.)

[jreagan70]

He said that oligoclonal bands can come and go, and are typically only present during active inflammation.

A lot of doctors believe that, but the medical literature doesn't support it.

The medical literature doesn't contain a lot of statements like "lumbar punctures can be done any time because O-bands are always present." What is telling is that the literature doesn't contain statements that timing is important because O-bands show up only during active inflammation. Such statements are conspicuous in their absence.

What I find most significant is that the 2010 revision of the MacDonald diagnostic criteria -- the gold standard for MS diagnosis -- contain no such statement about timing being a factor in lumbar punctures and cerebrospinal fluid analysis. If O-bands came and went and timing of analysis were important, the MacDonald criteria would be the one place such a statement would certainly be. Again, conspicuous in its absence.

Here's a statement from an article from a peer-reviewed journal (as opposed to your neurologist's own opinion):

"Once present, CSF OB [cerebrospinal fluid oligoclonal bands] persists in the individual patient irrespective of MS course or therapy."

Oligoclonal bands in multiple sclerosis cerebrospinal fluid: an update on methodology and clinical usefulness. Link H, Huang YM. J Neuroimmunol. 2006 Nov;180(1-2):17-28.

He believes that the MRI, in his experience, very much looks like the MRI of an MS patient.

That may be your neurologist's experience, but how much experience does he actually have in looking at the positive MRIs of MS patients? The radiologist, who also has experience looking at the MRIs of MS patients, felt that the lesions were nonspecific. MS lesions look a particular way, and the radiologist didn't see the typical characteristics.

So in looking at the results of your neurology workup, all you have are nonspecific brain lesions. A VEP assesses for indications of demyelination in a large part of the brain, and your VEP results are normal. That doesn't support that the nonspecific lesions indicate demyelination, and it doesn't support a diagnosis of radiologically isolated syndrome that, if present, could suggest the development of MS later.

Your CSF analysis doesn't indicate a history of brain or spinal cord inflammation. You have no neurological symptoms now, nor do you have a history of demyelinating events that is necessary for a diagnosis of MS. And it sounds like your neurological exam is normal.

it really sounds like your neurologist is jumping the gun a bit because you don't have any test or exam results that indicate MS. You don't come anywhere close to meeting the MacDonald criteria for diagnosis.

This is the most important thing I can say at this point:
Radiology reports include an impression of what the most likely explanations for the findings are. In the case of nonspecific lesions, the possibilities are are given. Additional follow-up testing is done to rule in or rule out the possibilities and come to a differential diagnosis. You had follow-up testing for MS and the tests are negative. There's no support for MS at this time.

In case you haven't seen it, another member posted an article about a study just presented at the 2016 meeting of the American Academy of Neurology: Misdiagnosis of MS Common, Associated With Morbidity (http://www.neurologyadvisor.com/aan-...rticle/490313/).

In light of how often MS is misdiagnosed and the problems that can cause, your neurologist's over-eagerness to "predict" a diagnosis of MS for you sends up a flurry of red flags.

I also think it's critical to not overinterpret the retina specialist's comment that your retinal condition might have a connection to MS. That only means maybe, kinda, sorta, somebody thought so one time but just as equally maybe not. Most "mights" and "could be's" never turn into anything. Brad Pitt and George Clooney might have been in my hot tub once. But then again, maybe not.

You don't come anywhere close to meeting the diagnostic criteria for MS, so not being able to get a quick second opinion by an MS specialist isn't critical. All of your neurological tests are negative. The only thing in question is whether the lesions on your brain MRI are more typical of MS than the radiologist thinks or are truly more nonspecific and less typical of MS than your neurologist thinks ( and we already know that his beliefs about O-bands aren't supported by the experts in MS or the majority of medical literature).

Since your MRI is the only thing in question, you might consider having your MRI read by a different radiologist. You can petition your medical insurance for a re-read, or you can pay for it yourself out-of-pocket if it's that important to you. You can contact your local chapter of the National Multiple Sclerosis Society and ask if they have a suggestion for a radiologist. You can also find the nearest center to you in the directory of the Consortium of Multiple Sclerosis Centers (www.mscare.org > Directories > MS Centers) and ask them if they can recommend a radiologist.

Your original question was do you have an atypical presentation of MS. The answer appears to be no. You have a retinal condition, but nothing you've told us about points to MS.

[aytpicalsymptom]

jreagan70,

Thanks for the citation and for your thorough post. Here is the precise verbiage of the radiologist's report:

"Mild scattered periventricular and subcortical matter nonspecific signal abnormalities.

...

Diagnostic considerations include demyelinating process especially given patient's clinical history [visual disturbances] with other etiologies including post infectious or inflammatory process or migraine headaches also possibilities."

The "clinical history" refers only to the visual disturbances, which have now been diagnosed as a rare retinal disorder. My neurological exam is normal. I have no other symptoms.

The neurologist doesn't think this could be caused by migraine headaches (I have had one in my life (one episode of visual aura without migraine pain)). He doesn't think it could be vasculitis based on the location of the lesions. He says that rheumatological diseases are unlikely (bloodwork normal and no other symptoms). If post-infectious demyelination, I would have been very, very ill and would remember the infection.

He does not want to do any further testing except periodic MRI scans, as he is quite convinced it is pre-clinical MS.

I certainly want to get to the bottom of this and will be looking for a second opinion by an MS specialist.