Spoke to my neuro earlier and she has said that I have all the markers of MS in my CSF … however …
She said I also have a ‘couple’ in my bloodstream which is unusual. Anyone came across this?
Because of this I have a diagnosis of ‘likely MS’ until either a consultant says it is MS or unless it turns out to be MS.
Not all my results are in though, my LP was only done Monday so there are tests that take longer waiting to come back.
Also, cystic fibrosis is in my gene pool, so don’t know if that is what the extra markers might be -though I forgot to mention this to my current neuro (I’m on my 2nd or 3rd).
So all-in-all I have plaques on my cord and brain, as well as all the markers of MS in my CSF -but with a couple of the hormonal bands (I am sure was the term used) in my bloodstream which is unusual.
Hi,
Normally, the hallmark of MS is oligoclonal bands (pretty sure it must have been those, not “hormonal”) in the CSF, which are NOT replicated in the blood. That points to an inflammatory process (such as MS) which is confined to the central nervous symptom, but is not general.
I’d always understood it was not unusual or significant to have “a few” bands in blood - the key thing being whether there are any in the CSF that are not matched. If you have matching bands in both CSF and blood, it’s suggestive of a more general inflammatory process, which is not confined to the CNS.
I’ve no idea if cystic fibrosis causes oligoclonal bands, but I suspect not, because I don’t think it’s an inflammatory condition. I’m sure it can be tested for in blood, because (unlike MS) it’s the result of a single faulty gene which can be tested for.
However, regardless whether it causes o-bands or not, it would be unusual to reach adult life without knowing you had cystic fibrosis, so I think that’s probably a red herring.
I may be wrong, and if it’s in your family, you’d know better than me, but I do not think cystic fibrosis causes CNS lesions either, so it would not seem to properly explain your symptoms.
Sorry I can’t shed any more light.
I’m also a little bit confused by how your LP results (the key ones, anyway) came back so quickly, as I’d always understood the tests involved growing a culture in the lab, which could take from a few days to a couple of weeks. So I’m surprised your neuro can say so early and so conclusively that you do have o-bands in both samples.
Tina
On the NHS website it says you can have your results as quickly as 2 days and that was 3.
From Lumbar puncture - NHS
I had my MRI results quickly as well -about 1-2 weeks. Maybe they are making up for misdiagnosing me for 16 years.
What I was thinking with the CF was maybe it giving a false positive, just banded it out there in case. Nothing to suggest I have what it is that causes it.
I’ve never heard of false positives with the CSF - and even if there were, it would be a remarkable coincidence if they exactly matched the ones in the blood, so even if one sample had got messed up somehow, how could they mess up both in exactly the same way?
It doesn’t seem to me that it’s very likely to be lab error, but beyond that, I don’t know what it means.
Tina
That’s not what I mean.
I’m talking about the CSF is the way it ‘should be’ for MS and that’s right, but something else completely different producing the same/similar marker in the blood.
Looks like it is either MS that is also affecting my blood in a way it usually doesn’t or something else that has all the characteristics of MS.
I would say this result hints that it isn’t MS, and that’s why your diagnosis hasn’t moved on from “likely MS”.
The chances of it being lab error are minuscule, because the key is the two samples MATCHED. They wouldn’t exactly match if it was down to lab error, or if there were two completely unrelated causes. You couldn’t get an identical match by chance that way. There appears to be something going on that’s affecting both blood and CSF. MS affects only CSF. I’ve never heard of it “also affecting blood” - that is one of the reasons they do the test - to distinguish between a disease like MS, which only affects the central nervous system, and other disease processes, which are more generalised.
Same o-bands in both would suggest the latter.
Tina
I always wanted to be at the forefront of something … getting some new weird illness and being a lab rat wasn’t what I had in mind though. 
But surely it could still be overlapping neurological conditions. I only know what I’ve picked up since February. But I am unlucky enough to have been called a depressed alcoholic instead of being properly diagnosed for over a decade and for a fact I have gastro-peresis on top of ‘whatever’, plus astigmatism. It would be just my luck.
Meh, I’m sure they will work it out …
Anyways, still have an MS nurse assigned and still going in that direction and best of all I have conclusive proof now from MRI’s, CSF and bloods to show I am not imagining things or looking for a life on the dole.
Now I just need to deal with ATOS.