Hi, I have had rrms for 12yrs. For the past couple of years my daughter 30, has been having on/off neurological episodes. She has had one grey area on mri but has just had a letter saying she has ‘positive csf unmatched oligoclonal bands’. They are yet to make an app with the neuro but is this going to be a def ms dx? Just for me at the moment so I can get used to the idea before her app. Thank you, sue
What a deeply unhelpful letter! I have no idea whether it’s good news or bad. Maybe your GP could help?
I know, why would they even send a letter like that without an appointment.
It does sound a bit suggestive. The positive LP does anyway. But one ‘grey area’ on MRI just sounds like waffle.
Clearly your daughter is the right (ie wrong) age and gender as well as a close relative with MS. And she’s had neuro symptoms on and off. Soooo…
Obviously you imagine it’s very likely MS, but in all honesty, it is just as likely that she won’t get an MS diagnosis. If a grey area indicates a demyelinating lesion (and who knows - the neuros all describe things differently), it’s only one. And the neuro may only officially have just one attack to judge his/her diagnosis by. So this in itself probably isn’t sufficient to diagnose MS, however suggestive your daughters case is.
Clearly this is just my (non medical) opinion, but considering the McDonald Criteria, I wouldn’t be expecting any positive decision from the neurologist. More likely perhaps is a ‘well, it could be X but might not be’, or ‘maybe it’s a CIS’ (IMO probably the most irritating diagnosis ever!). It’s possible the neuro will make a definitive decision (yes it is, or no it’s not). Personally, I doubt very much the neuro will make a definite ‘it’s not MS’ pronouncement. Not that I would expect a definite yes it is, just that s/he wouldn’t want to make a negative decision based on the information you’ve given us.
All this is merely my opinion. It’s based purely on reading other people’s experiences. And I suspect you’re anticipating the same. Bl00dy unhelpful letter though. Maybe you / your daughter should phone the neurologists secretary and ask what she’s supposed to do with such skimpy information without even a phone appointment suggested!
The letter means that there are bands in her CSF but not in her blood (hence ‘unmatched’). This suggests that there has been inflammation. That it is unmatched rules out some causes of inflammation. It doesn’t rule out MS. However it isn’t specific for MS either. So it is a step closer to getting a diagnosis, but it may be that there are not enough markers from her MRI scan and/or other tests to reach a definite diagnosis at the moment.
Probably you need to be prepared for a period of uncertainty, with MS as a possibility.