Neuro Results - Oligoclonal bands in CSF not in serum

New diagnosis and before diagnosis
1

Hi

I’m new posting to this board but reviewing since June 2016 when I was tested due to some symptoms which appeared like MS. I had an episode which lasted a few hours where I had bright spots in my left eye. I tried to read and I knew the words I was looking at but could not read (weird). This did not last long. Then had a very bad headache and woke up with poor balance. This lasted about a week. Had a week off work. Went back, could not type and could not stop crying.

Went to GP as I was worried, although the symptoms had mostly gone (apart from anxiety). I was referred to A&E, had a CT and MRI. Found brain lesions in CT and lots of areas of inflammation in MRI. Hospital diagnosed brain cancer but realised their mistake the next day!

Had a specialist appointment and consultant said it looked like ADEM but repeated the MRI and I had a lumbar puncture, which was 5 weeks ago.

Just had the results and an appointment with the consultant. The letter states that MRI has improved but the LP showed a small number of white cells (7), normal protein and glucose. There were oligoclonal bands present in the CSF which were not present in the serum.

I’ve been reading a lot about MS since this all happened and googled the above and it does not look great. I’m assuming because the specialist has booked me in for a review, that all is not well. I should say that I have type 1 diabetes for 25 years and if I have one autoimmune condition, I may have others. I’m 38, nearly 39 and from what I know, I am thr right age for MS.

So I just wanted to see if anyone had similar results, if this definitely means MS…

Think I’ve been lucky so far as the only physical problem has been muscle tension in my right arm, leg and foot for four weeks (which could be stress related as I’ve been put on anxiety meds due to the initial misdiagnosis).

Any comments would be appreciated.

Best wishes

2

Hello

The problem with this forum is that when you have unexplained neurological symptoms and tests that you have to wait for an interpretation of, of course you ask the questions you have raised, numberwang.

The only person who can possibly answer your questions is the neurologist who has all your test results in front of him/her.

The presence of oligoclonal bands could indicate MS, but it might not. See the MS Trust info about LPs: Lumbar puncture | MS Trust

Equally, your CT and MRI could show MS or ADEM or something else.

Your initial problem with spots in eyes and inability to read don’t sound like MS as an MS relapse can only be classed as such if lit lasts for at least 24 hours. See the MSS info on what classes as a relapse: https://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms

And of course, you are right, that the presence of one AI condition makes a second slightly more likely. But of course, most people with MS only have one AI condition. And in fact many people with MS are the first in their family to have an AI condition.

The real issue with self diagnosis is that one tends to zero in on some things that fit a diagnosis, and ignore the ones that don’t. And even if someone answers your post with what seems to be identical experiences and symptoms to you, it wouldn’t mean that you have the identical diagnosis.

I think it’s a miserable, difficult time, waiting for a diagnosis of something. And while the diagnosis of MS is something no one really wants, just to have answers can make you feel a release of the stress and severe anxiety caused by the wait.

I truly hope you don’t have too long to wait to get the answers to your questions. Living in limbo land is not an easy time. In many ways, life before the Internet existed to look up symptoms and diseases was easier.

All the best Sue

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