How many oligoclonal bands confirm MS

[FindingAnswersMaccy]

Hiya

How many oligoclonal bands confirm MS ?

Can you have lesions only in brain and not spine ?

[Lilith08]

I don’t know about the oligoclonal bands (my lumbar puncture was clear). But yes, you can have lesions only in the brain.

As I understand it, a diagnosis requires evidence of lesions (scarring) in at least two distinct areas. My initial brain MRI had one lesion. Everything else was tested: spine (cervical/neck and upper back/thoracic), cerebrospinal fluid (CSF, from lumbar puncture), and eyes (Evoked Potentials), but with no further evidence of damage I had to sit with Clinically Isolated Syndrome (CIS) as my diagnosis for a couple years. I still have lesions only in the brain.

Now, I don’t know what other factors are involved beyond the multiple lesions/scars. That’s a good question for the neurologist.

[FindingAnswersMaccy in reply to Lilith08]

My brain showed 1 Non enhancing t2w1 hyperintense lesion

& 1 T1w1 hypo intense lesions

My Spine MRI is normal

My Lumber puncher test showed 1-3 lesions

My Evoked potential test is normal

My Neuro says we shall wait

I am anxious and its not helping. Do you have any knowledge around this

[Lilith08]

I hope someone comes along with a better understanding of the CSF bands. And the description of the lesions! The only thing I think I know is that an enhancing lesion is new, while non enhancing is older.

Location of the brain lesions is something else of interest, as they may have some correlation to your symptoms.

[kdali]

I don’t remember about bands and I was never checked. I think most people have lesions only in the brain. Spinal MS is a thing too. Relapsing means two or more demyelinating events separated by time (or location). Diagnosis criteria is a guide for the provider to use, and they all will not necessarily agree.

[FindingAnswersMaccy]

is there any significance of T2WI or T1WI

[greaterexp]

Look at Aaron Boster's video on YouTube called "What is a Spinal Tap?" It's a couple of years old, but very well explained.

mscenter.org/education/publ...

MS can be difficult to diagnose. I had a CIS, but was negative for OCBs, and my MRI was essentially normal. That was well over 20 years ago when MRIs were not nearly as advanced then as they are now. My then neurologist shrugged his shoulders about a diagnosis, even though my clinical exam and history certainly suggested some sort of neurological problem. I had symptoms for years, but never associated them with MS until having a full blown relapse about 4 years ago. My CSF was still negative for oligoclonal bands, but my MRI showed multiple lesions in the brain, and my clinical exam presented as MS. Though I'm saddened that it took so long to get a diagnosis, I understand why, at that time, my neurologist did not feel comfortable giving me any diagnosis or attempting to treat my unknown condition. Of course, there was not much in the way of treatment then, anyway.

It's important to ask lots of questions of your neurologist and take notes. If you don't feel your questions are being addressed, it might be a good idea to seek another neurologist, especially if you can go to an MS center. We all understand how hard it is to be patient in awaiting a diagnosis, but hope you get clear answers very soon.

[Cutefreckles72]

My brain is fine but my spine is scarred especially on the right side and a little on the left side. Problems only in my legs no where else.

[mm1527mm]

Never got a clear answer on this. I had no bands but apparently proteins showing immflamation. Many brain lesions over 10. One episode but told its definitely ms based on my brain mri.

[HensTooth]

I had only 1 o-band. Several lesions in brain but not spine. And received MS diagnosis, per McDonald criteria. Here is info from MSTrust.org.uk:

“The key requirement for a diagnosis of MS is evidence of damage to the central nervous system that is disseminated in time and space. ...This distinguishes MS from other neurological conditions. The McDonald criteria use MRI evidence extensively and suggest that an MRI scan is made for everyone in whom an MS diagnosis is possible. ...The presence of oligoclonal bands in the spinal fluid is also a good marker for MS. It shows that there has been disease activity in the past, and so can be used as evidence of DIT [dissemination in time].”

[Frances_B]

This comment is not going to give you the answers you want as realistically only an answer to the question of “do I have MS or not” is what you want to know and none of us here can give you that answer. However, here’s some info which might help you understand why a diagnosis of MS is not easily reached – it is often a case of “once everything else has been ruled out and if MS is the only thing left, then it’s probably MS” – it is a diagnosis of exclusion not inclusion.

•PwMS may or may not have oligoclonal bands in their CSF - it's about 85% do and 15% don't, but having them does not categorically result in a diagnosis of MS.

•People with MS (PwMS) can have lesions in their brain only or in brain and spine. However, it is pretty rare for an MS diagnosis to be made if there are spinal lesions only, that’s more likely to be a condition called transverse myelitis, which can produce similar symptoms to some MS symptoms.

•“Lesions” that show up on an MRI may not be lesions caused by MS – many people have “white spots” on their MRIs and these can be totally unrelated to MS. It’s why people looking at their own MRIs and counting white spots is a very dangerous thing.

•It can take a very long time to get an MS diagnosis - as others have noted, it can be years between a first episode and a second episode and some people may never have a second episode. This is where the McDonald criteria requirement for “dissemination in time and space” comes in.

•Current MS treatment approaches tend toward treating early, and the old “wait and see if things get worse” approach is largely out of favour. However, MS drugs are not to be taken lightly - they are very expensive, and have significant side effects for some people. You do not want to be taking powerful drugs for a disease you may not actually have.

To help you understand what stuff like T2W1 means etc, get yourself a cuppa and sit down and work through this article. It’s very long, but it’s written in language that’s understandable to ordinary people.

multiple-sclerosis-research...

(Note that the article was posted back in 2015, so references to the McDonald criteria may be a bit out of date because the criteria have had some revisions done in the last two or three years)

Out of curiosity – did you have a full set of blood tests done – including Vitamin B12? Vitamin B12 deficiency is one of the many MS mimics which needs to be ruled out. The info about MS mimics on this link might help you to understand why diagnosing MS is neither quick or easy.

msfocus.org/Magazine/Magazi...

I realise that waiting for answers is hard, but you did mention in your first post that the neuro you have already seen is an MS specialist, so there is probably no point at the moment in changing doctors - you are already seeing the right sort of neuro, and that neuro has already done all of the appropriate tests. Changing doctors tends to really only be useful if you are not seeing an MS specialist, or if the doctor is playing silly “I’m the doctor, you’re the patient” games and not answering questions or keeping you informed.

You've also written that you have another appointment in 2 months so this doctor is clearly not dragging his feet like some do. You also have copies of the results of your tests, so information is not being kept hidden from you, but you do need to stop trying to pre-empt the expertise and knowledge of someone who has many many years of training that you don’t have. Yes, it’s hard, but many/most of us have had to go through this.

[FindingAnswersMaccy in reply to Frances_B]

Thank you for explaining Frances

it really helped

I did get my B12 done and its normal however Vitamin D was deficient

[Lilith08 in reply to Frances_B]

Thanks for your detailed explanation! I learned a few things.

[Hidden]

These are great questions I will find out what I can

[Hidden]

I had a spinal tap and had bands but do not know how many

[FindingAnswersMaccy in reply to Hidden]

you can find it in your reports

[stripybutterfly]

I had a LP and it just said 'Multiple Ogligoclonal bands'.

I think having 2 bands or more is significant.

[FindingAnswersMaccy in reply to stripybutterfly]

For me they said 1-3, Now I am not sure if that was 1 or 2 or 3

[Bwine]

Apparently so because I have never once had a spinal tap but was diagnosed with MS 25 years ago. To this day, no one has even mentioned a spinal tap.

[Lilith08 in reply to Bwine]

Perhaps you had enough other evidence, so they didn’t need to look for more?

[Bwine in reply to Lilith08]

Lilith08 I guess so but I just thought they would’ve ordered one in the beginning along with other tests.

[Buckley123]

Interesting 🧐

I have multiple scarring on brain my lp was negative but it’s not ms because it’s in the wrong area of the brain they still don’t know what it is..

my mum had ms xxx