OCBs (oligoclonal bands) in CSF and Blood Serum.

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Hello, 

I am being treated for an auto-immune issue that appears to be affecting my nervous system. However, there is a bit of a ? over the diagnosis as my symptoms are atypical for the anti-bodies I have. Therefore I a having treatment to see how I respond. I was in hospital a few weeks ago and my notes were left open on the bed and I saw they said, 'OCBs' positive, blood and CSF.' The test was to look for something else which was negative. 

When I saw the consultant the next day I didn't want to say I had been reading the notes (not sure why as I know I'm entitled to), so I asked him if the CSF showed anything else that might indicate what was going on. He replied, 'there is a lot of stuff in CSF and we don't fully understand what it means yet.' 

Has anyone on here tested positive for OCBs in CSF and blood serum and were you told what it can indicate?

Thanks, BP. 

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  • Posted

    I had 2 paired mirrored oligoclonal bands in my CNS and blood about 4 years ago. They think that I had mild GBS but most my doctors dismissed this and said nothing was wrong. I was very sick and could barely walk but I “looked great.” I am struggling with thyroiditis now and high antibodies wondering if I had this occurring back then. The dr in the Hospital told me that my spinal tap was normal but I later learned  of these bands when I picked up my records. Somehow I rode out my condition with little medical support at the time. This time I’m not sure if I can. It’s so tough to find knowledgeable doctors in this area!

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    • Posted

      Hello, 

      Yes, I have had that, 'you look well.' I have read that the body can make them as a response to anti-body activity which makes sense in my scenario. It is difficult and I struggled for two years but I thankfully have a great Neuro-immunologist now who is trying treatment with me. 

      I wish you well. 

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