Positive LP but inconclusive MRI.

I had a LP back in December 2018, and although it came back positive for Oligoclonal Bands.

My symptom history (vertigo, balance, vision etc) dating back 10 years and the positive O-band test was passed onto an MS specialist who recommended I have another LP (with the proper blood tests).

I had a brain MRI in 2018 as well, only showed a few ‘white spots’. I’ve not had a spinal MRI.

Saw another neurologist today, he said that even though I have a Oligoclonal bands in my CSF, since my brain MRI was ‘mostly OK’ they usually wouldn’t diagnose anything with that.

So what do I do? Just wait? I just feel so depressed! It was such a long battle to get re-tested and to get doctors to look at my history.

Thanks.

Well, it’s weary work, arguing with medics when the results are inconclusive. You can seek a second opinion if you want, but you might be banging your head against a brick wall, and you don’t have energy to waste on that. My suggestion, if you can bear it, would be to wait and see. If you have MS, it will declare itself at some point, and your consultant may well switch mode and take a different approach pretty fast. Many of us have experience of that exactly that switch happening. Time, as they say, is the best diagnostician.

In any case, a cht with your GP might be in order. Your GP is interested in you as a person, not just a collection of fuzzy blobs on a scan. .A good GP is a fount of knowledge and good sense.

Alison

Thank you for the reply!

The first LP wasn’t done properly- blood samples were not taken at the time. Although I had ‘multiple O-bands’ in my CSF.

So I had a lenthy complaints process and an MS specialist recommended they re-do the Lumbar Puncture, making sure that blood is taken this time.

The neurologist who told me all this (about not diagnosing yet) is not an MS specialist. I was just so confused why the MS specialist recommended I get the LP re-done, after looking at my symptom history. To now be told that I have to wait. It’s so draining!

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Just wondering, as I can’t quite make out from your post - is the MRI they are talking about the one from 2018, or has a newer one been done, and shown to be ‘mostly ok’? Have you had a recent lumbar puncture, and that is still showing the O bands? Have you had the bloods done this time and were there no bands in that?

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Thanks for the reply.

Yes, he was going by the 2018 brain MRI that was ‘mostly OK’- I had some small lesions.

I’ve not had an MRI since.

And in the meantime since the 2018 MRI, I’ve had an episode of double vision (this was during lockdown so I didn’t get it seen to). I’ve also been having issues with the weakening of my eye muscle, so need a new prism prescription.

Yes, I had a repeat Lumbar Puncture in August this year, this time with blood. And no O-bands in the blood. (all other diseases that can cause O-bands have been excluded).

It’s just really frustrating because I’ve been having symptoms for years- vertigo, burning sensation in my back, vision changes, balance, cognitve etc.

I think you should be asking for another MRI scan to see whether there are any new lesions or not. Have a word with your GP, they may be able/willing to order the scan. I don’t think it is an unreasonable request.

I don’t understand where this recent neurologist is coming from. If he thought he was just there to make an opinion on past tests, then maybe, but that is now the past! Did he not give an indication of what should happen next, or were you effectively waved bye bye?

Your second LP has verified your first LP, that there has been some inflammation in your central nervous system. That can’t of itself determine what was the cause of the inflammation. But importantly the bloods have been done this time, and they were clear, so that can rule out some things…

An MRI could narrow it down further. It may be that there is no change since your previous one, but it can’t just be assumed, particularly as you have noticed further symptoms since then. Quite a bit can change in 2 years. If no change then it may get you no closer to a definitive diagnosis, but it could reassure that there has been no obvious progression that an MRI is capable of picking up, and then it is probably a case of wait and see how it progresses.

You seem to have been messed about. Sadly this seems to happen quite a lot. You don’t live in Northern Ireland? I know waiting lists to see neurologists are horrendous there, which could explain the lack of patient care you’ve experienced. In England there can be long waits, but not on the Northern Ireland scale.

Thanks.

I really have no idea what is happening.

I spoke with the nurse from the MS society, and she said the same thing- ask for a recent MRI because it’s not really right to be going off a 2 year old scan! Especially as I’ve had symptoms in the meantime.

He’s not an MS specialist- it’s the MS specialist who looked through my history and recommended the LP be re-done.

I did think it was odd that he was going by the 2018 brain MRI.

He didn’t really give any indication, I left the appointment confused and upset. I just feel like I’ve been messed about. Not just with having to have the 2nd LP re-done and now being told all this.

Hi, I totally understand your feelings of frustration and confusion.

It took 22 years for me to get a full and proper diagnosis of Spinal PPMS.

Hang in there chick.

Boudsx

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I got the letter/ report today and it’s so confusing.

Basically confirmed that I had a clear MRI 10 years ago (without contrast- I was tested for something completely different) and that the brain MRI from 2018, this shows ‘no disease progression’.

Basically said that ‘she has a positive O-bands in her LP’ (both in December 2018 and August 2020) but a stable MRI (talking about the one I had 10 years ago and the one I had in 2018)’.

This makes no sense to me? Because I’ve not an a brain MRI since the positive LP in December 2018. Why are they talking about MRIs from 2010 until 2018??

It’s very vague and talks about ‘a postive (LP) result would encourage follow-up but no specific further investigations’.

And that’s it. I have no idea what is happening, there’s no explanation of what a ‘follow up’ is.

So I’ve had 2 lumbar punctures, for what?? I just find it weird that I’ve had 2 LPs but no more MRIs? The LPs still say the same thing- Oligoclonal bands in my spinal fluid.

I’m very confused and really upset!

Hi all

very new to this as I have literally just been diagnosed with rrms,

I am 43 years old, and also have epilepsy. I have had that since I was 18.

y neurologist has seen me so many times for at least a couple of years now , lumber puncture, mri’s etc

anyway, they found 5 Lesions in the brain and 1 at the top of the spine

my eye sight of I were to keep my head looking forward and were to look left I always see double, very annoying !

my memory is rediculous,pins and needles I my left side of leg and foot, sometimes in my hand too, and a cold feeling.

i sometimes have to make more of an effort to lift my right foot when I walk ?

i am due to have my infusion soon after my second covid jab as my neurologist wants me to start as soon as, slightly worrying!

can someone please help and say as to whether they get any kind of financial help over time because I am really worried about my job. Thankyou Paul

I think it is weird you are not being referred for a new MRI. 2018 is quite a while ago. Can you afford to see a neurologist privately, to see about getting a private MRI done? The whole process is likely to cost about £1000 for a private consultation and then an MRI. But it may be worth it for a speedier diagnosis. Tell the new consultant about your history and I’m sure they would be more than keen to refer you a new MRI.

Hi Lealand.

I have the double vision issue. A specialist can sort you out with a pair of glasses with a prism to attached to ring your vision back together

What is the cause of your double vision Jonny??? How did It start?

Thank you so much @jonny316