Forum

Confused by son's results

New diagnosis and before diagnosis
#1

Hi

Our 28 year old son (J) had what appeared to be a stroke, two years ago this week. He started with a numb leg, which spread up the trunk and arm and eventually to his face, which drooped quite significantly. Initial diagnosis was possible MS but then after a CT scan we were told it was a stroke. He had double vision and speech problems but recovered reasonably well, with sight and speech eventually returning to normal. However, he has been suffering with numbness and tingling of limbs, restless legs, headaches, extreme tiredness as well as insomnia and occasionally we struggle to understand some of his speech. These symptoms aren’t all happening at once and not every day. Some days he’ll have one or two of the symptoms then a different set of symptoms the next day but occasionally he’ll get a day where he has none.

He had a lumbar puncture last year and the results say ‘unmatched oligoclonal bands’ and we have no idea what this means because his consultant says he does not have MS and probably didn’t have a stroke but more likely a brainstem demyelination. We aren’t convinced by this, would the demyelination mimic a stroke or MS?

Thanks for any advice :relaxed:

#2

Hello

Brainstem demyelination seems to often be part of MS, but if there are no other lesions to be seen in other areas of the CNS, it may be impossible to diagnose MS. Often people with brainstem lesions alone are diagnosed with Clinically Isolated Syndrome (CIS) rather than MS.

‘Unmatched oligoclonal bands’ is a result from a lumbar puncture in which oligoclonal bands are present in the CSF but not in the blood taken at the same time. About 85% of people with MS have unmatched ‘O’ bands. See https://www.mstrust.org.uk/a-z/lumbar-puncture

So it seems that his brainstem demyelination is much MS in some ways, and probably some neurologists would class it as MS.

I suspect he really needs to get more information from his neurologist.

Sue

1 Like
#3

Hi Sue, many thanks for your reply. I forgot to mention that he has autism so we accompany him to all appointments and deal with the consultants etc. I think you are right, we do need more info and I’m starting to believe he does actually have MS.

Thanks again for the info :relaxed:

1 Like
#4

I had unmatched o bands, but after 10 years was diagnosed with MS. PPMS.

go for a second opinion. He could have had an attack of bells palsy which would make him look like he is having a stroke, This is a good article about bells palsy and some of the diseases which may have these stroke like occurrences including MS.

http://www.mult-sclerosis.org/Bellspalsy.html

#5

That’s brilliant, thank you! :relaxed:

#6

Please let us know how you get on ok. x

#7

We’re awaiting an MRI scan and yes, I’'ll let you know, thank you :relaxed: