“CSF was clear with no organisms or growth. There were 10 white cell counts, 92% lymphocytes, 2% netrophils, 6% unclassified. 0 red cell count.”
Positive for O bands in csf only but mri showed my initial inflammation was resolved and no signs of lesions on brain or elsewhere. A really mixed situation.
my understanding is that ms can present up to 7x the normal white cell count (0-5) but ms tends to have increased white cells. Is 10 significant for ms or is this consistent with a viral infection ?
Cant get the neuro to return my calls, instead she made an appointment for the end of January but moved it to the end of November because I’m pestering them so much.
Hi. My understanding of the lumbar is with particular regard to O bands. If they are found in both your csf and blood then it suggests a more systemic cause for your condition so unlikely to be MS. From what you’ve said o bands were found exclusively in the csf which implies inflammation in central nervous system alone. But with no lesions I don’t know where you stand. Of course lumbar evidence is one part of the jigsaw and am not convinced it can be used to diagnose alone.
There was 1 area of inflammation at T12 but that settled. I believe o bands are present in lots of other CNS conditions and wonder if a white cell count of 10 is indicative of ms or maybe something else
I think it means the neurologist probably won’t be able to diagnose you with MS as you have no lesions. It’s possibly been a one off event (CIS?) and has resolved.
But if you still have symptoms then I don’t quite know where you stand.
Given that your CSF was positive for O bands, chances are the neurologist will want to play a waiting game and review you / redo the MRI at some point.
But obviously this is a non medical opinion based purely on what you’ve put above. You may find the neuro has a totally different expert opinion when you see her. At least you’ve only got a couple of weeks to wait. Well done for getting the appointment moved.
The mri says low risk, the o bands increase that risk, the white blood cells are higher than normal but less than is often the case in ms.
It’s a real hotch potch of a situation but i know it’s better than many of the possible outcomes !
It would just be nice to be able to speak with the neuro and clarify but i suppose i’ve reduced that wait to a few weeks now instead of nearly 3 months. I’m trying to research the role played by white blood cells in MS within the csf as i believe its these wee buggers that carry the bits that cause the damage.
I’ve got another MRI in 6 months but wonder if there is benefit in another LP as these wee O bands are present in other illnesses but disappear from the CSF however are permanent in MS, i wonder why they don’t do a follow up LP as a matter of course if this is correct.
on a separate note, folk like your good self who consistently take the time to reply to posts like mine are what makes this forum such a worthwhile place for newbies like me who are trying to get our heads around things.
Brian, this is an evolving place, you clearly are a person who deals with things by maximising knolege. Therefore, please remember, down the line, what ever your outcome to stay on this forum & share what you have learnt.
p.s. Instinctively I feel you may well have a long road & an extended stay in good old limbo land. Although I completely understand limbo land is not a good place to be, my hope for everyone is that it turns out to be something wired & recoverable from, and not long term.
as one of my bosses stated when I moved roles “Brian has an enquiring mind” lol. I’m an one of life’s planners, I like to know as much as I can then base my plans around the most likely outcomes. The possibility of MS really floored me but by learning more about it and discovering the promising research into remyelination and the potential of hsct i feel much better about being able to be proactive.
I also work in an evidence based job so I do like facts and % risks. I’ve had dealings with neurologists in a Work context and I know they’re highly skilled and educated but sometimes the body surprises them too. I just hope mine remains as CIS but the more I learn the more I can cope with a different outcome.
I’ve learnt that most people ms diagnosis is a journey and this site has been a huge help to me. I’ll be in here for a good wee while no matter what my outcome.