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Oligoclonal bands-anyone??

Hi,

I last posted something in January because I felt so good after having a good and relaxing holiday that symptoms seemed to have just disappeared…well then suddenly they came back to remind me…however, I have got my next scheduled MRI brain and spine on the 11th of March (last one six months ago but only of brain and neck) and after that I will most probably see my neurologist because I specifically asked for an appointment and not just a letter with results…I feel a bit anxious cause what if my mri scans of the brain are the same and there´s nothing in my spine then what? I have unidentified white spots in the brain but in non-specific areas for ms…and the last two scans have showed no change…

I had a LP in June last year which showed 6-8 oligoclonal bands and after all research I’ve done on my own that means antibodies in the CNS. But my neuro said to me I only had an “old” inflammation in a nervecell and that it’s nothing abnormal? in my medical records it says like this (transtlated from Swedish): 6-8 oligoclonal bands but normal CXCL13 och NFL and I can’t fathom what this means…simply can’t get my head around the fact that sources tell me that more than one oligoclonal band means something but my neuro tells me the opposite. I never asked because he didn’t show me the actual test result he just “explained” in “patient” words what it meant and I later checked my medical record. I have talked to a nurse about it and she said to me that means signs of inflammation…

The thing is that the neuro told me in August that most probably I don’t have ms though they still can’t rule it out until I have another brain scan-but can anyone explain to me why I’m suddenly to scan my spine and not only brain like before? and another thing I had a scan of my spine because of a slipped disc during autumn 2016 but without contrast and they were not looking for plaque then just my disc in the lower back area-is it possible that they couldn’t see that at that time as they weren’t looking for that specifically?

I guess you can sense my worries but the most scary part now is not having to deal with a diagnosis but having to deal with not having any diagnosis because where do I go from there??? I still have weird symptoms coming and going and the last week or so my left ear keeps me awake sounding like a washing machine(can be an ear infection I know but still)… again where will I be left -left in limboland again or worse not even limboland as they will consider me a solved matter as far as MS goes…

Still I’m up and about and I’m working away apart from this little break!

Thanks for reading and even more so if you have any comments on what I’ve just shared=)

Hello

I saw your post a couple of days ago, but basically just don’t have much to offer in terms of information or help.

O bands are positive in the CSF of 80-95% of people with MS. But that doesn’t mean that everybody with O bands in their CSF has MS any more than it means the up to 20% of people with MS but without O bands are misdiagnosed.

So I understand completely that in some respects it’s even more scary to think that following your next MRI you might be definitively told your don’t have MS.

But to be honest, I don’t think there’s much you can do except wait until the results from the brain scan next week come back.

Just try not to worry too much about the results either way.

Come back here and tell us the results when you get them.

Sue