I have O-bands but no lesions, MS?

[Sariberry]

I've been struggling with all kinds of issues for a few years now. Things have been getting worse and I don't know what to do.

I've had multiple brain scans (and one spinal scan) that shows an unchanging lesion in my right temporal lobe. I'm told it is likely from a childhood injury I had. My spinal scan came back clear.

I had a lumbar puncture done a year and a half ago that showed 5 positive oglioclonal bands, but no elevation in protein levels.

I went to an MS specialist who thinks the o-bands could have been a fluke, but we haven't done another lumbar puncture to see if this is the case.

I'm feeling a little lost. I don't know who I should see or what the problem might be.

[BOK2Bjan]

Jason - could you tell us what your symptoms are? Also, why is it that you suspect Primary Progressive MS?  I know that many of us would like to help - but would need a little more history. Blessings, Jan

[Learninglifeslowly]

I have had two lumbar punctures first one showed two o-bands and second one 6 month later showed 3 Obands. But all the MRIs I have had of brain,cervical and thoracic have all been negative with no demylating activity.  My symptoms continue to get worse and no dx. Very frustrating and scary.  I think it is ppms but the lesions just haven’t formed yet.  Now there is a new medicine Ocrelizumab for ppms and with no dx I just keep progressing. :( I hope you are feeling better and all of you are on my prayers...

Jason

[BOK2Bjan]

I responded to your comment, but posted it erroniously as an answer to the original poster. Oops. So if you happen to read my response below - it was meant as a comment in response to your comment. Clear as mud, lol?

[supermum_ms]

Hi and welcome,

I don't know about obands being a fluke, if those 5 obands are unique to the serum and not also in the blood, it's still abnormal test evidence and shouldn't out of hand be passed off as a fluke.

5 obands alone wouldn't put MS at the top of your potential causes list because obands are not unique to MS and are not a component of the MS Mcdonald diagnostic criteria anymore.

IF your neurological clinical signs are not suggestive of a neurological causation 'and or' your brain and spinal MRI's are missing the suggestive or consistent lesion evidence,  then it would make sense to me for your neuro to be testing you for all the alternative explanations.

There are many non lesion related neurological conditions that also cause the same or similar symptoms as MS and there are many non neurological conditions that have been associated with the abnormal test evidence you actually have eg Lyme disease, Neuromyelitis optica (Devic's disease), Systemic lupus erythematosus, Neurosarcoidosis, Subacute sclerosing panencephalitis, Syphilis etc etc etc.

If you neuro isn't really helping you as you would like, it would probably be in your best interest to get your hands on all your tests results; MRI's, neurological reports, blood tests, nerve conductor tests etc and seek a second opinion

Hope that helps........JJ