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Oligoclonal bands

Sorry to keep posting stuff you must be all getting sick of me now… However! How many people had a test for Oligoclonal bands as part of their diagnosis? I remember reading on another website that a number of people had the test a few time with it only showing positive after two or three attempts. Also was it part of your diagnosis run up. I know it was for me quite early on but that was because at the start of my journey I was a private patient and it was the case that money and subsequently procedures was not an issue. Thanks Strudders

Hi, yes I assume you mean by lumbar puncture? I had it done as they weren’t 100% sure of dx. I think that’s when it’s used… to confirm dx. From my time on these boards… about 3 years… loads of people have had lumbar puncture, but certainly not all. Some people refuse them… but I think generally NHS are happy to do them if they need more info to help dx. It’s quite common using it for PPMS (which I have). Pat x

Hi Strudders, they said to me you have lesions but I’m not able to offer you a cause as yet. I will see you in 12 months to see how things progress, or you can go for a lumbar puncture. I had my other half with me who persuaded me to go for it. 8 weeks later I was back in his office being diagnosed. I think that for a lot of people it’s the only way to get a diagnosis. Particularly young people where the disease hasn’t had a chance to leave enough scars, in the right places. Like me :slight_smile: Suz xx

Thanks Pat! I just said yes as it was what they wanted, although I still maintain it’s what caused most of my pain, however that’s another story. Suz, that would make sense. I had it done and was positive, however we where still looking at Devics then but come the day of my letter from my MS specialist neurologist, he wrote positive for that, spinal lesion, one brain lesion and also positive hoovers signs… which I am still to understand… Strudders

Hi Strudders I did - was the first indication I might have MS and not a stroke like the Drs initially thought,

Gerard wrote:

Hi Strudders I did - was the first indication I might have MS and not a stroke like the Drs initially thought,

Wow!!! Funny you should say that. I had a suspected TIA 6 years ago after coming back from Australia after a 48 hour visit. (work) I lost my speech whilst at my desk and at the time there was not sign of a stroke on my MRI or the carotid angiogram they performed but they put it down to a TIA. As that was all done super quick because I was private, when I lost sight in my left eye I was referred to my old neurologist. He, after months and final MS DX, suggested that, that might have been my first symptom… Thanks for replying. What where your stroke symptoms? If you don’t mind me asking? Strudders

strudders wrote:

Sorry to keep posting stuff you must be all getting sick of me now… However! How many people had a test for Oligoclonal bands as part of their diagnosis? I remember reading on another website that a number of people had the test a few time with it only showing positive after two or three attempts. Also was it part of your diagnosis run up. I know it was for me quite early on but that was because at the start of my journey I was a private patient and it was the case that money and subsequently procedures was not an issue. Thanks Strudders

Hi Strudders, I went private too. My neuro wanted to do a LP, but I declined. As I already knew by that time that I had a problem with my spinal cord, the last thing I wanted was anybody sticking a needle anywhere near it! It’s entirely possible to diagnose without. In fact, despite its enduring popularity amongst neuros, the NICE guidelines suggest LP should be the exception, rather than the rule; only used where other evidence is inconclusive. So I got my diagnosis based on symptoms and MRIs. I just had to wait a little bit longer for it, that’s all. Tina

Me too, plus mri, bloodworks to rule out anything else, neurological examination and a positive for ON after VER, called something else now I believe. Electrodes glued to mi noggin showing brainwaves interrupted through optic nerve. bren x

Quote:

In fact, despite its enduring popularity amongst neuros, the NICE guidelines suggest LP should be the exception, rather than the rule

I wish I had known that at the time. To cut long story short, the Dr who did my LP was a new Dr on the neurology ward at Southampton. He tried 3 times to get to the right place including me having more local anaesthetic before he managed to get what he needed. From that point on I had back pain. I still to this day maintain that was what caused the issues I have today, not with spasticity, but the pain…

I have had 2 LPs both showed Oligoclonal banding. Both times the Dr performing it to call another Dr over to do it as they couldn’t get any fluid out. Pain was the order of the day both times :frowning:

yawn wrote:

Me too, plus mri, bloodworks to rule out anything else, neurological examination and a positive for ON after VER, called something else now I believe. Electrodes glued to mi noggin showing brainwaves interrupted through optic nerve. bren x

I had that too!!! Showed a delay in my left eye (only one was buggered then) had it again when both went and same result… :frowning:dave38 wrote:

I have had 2 LPs both showed Oligoclonal banding. Both times the Dr performing it to call another Dr over to do it as they couldn’t get any fluid out. Pain was the order of the day both times :frowning:

You would think for something so important and so near something so delicate they would ensure they got it right first time! And yes the pain was mad!!! Strudders

My MRI plus clinical stuff was pretty conclusive, but the neuro wanted to do an LP to get as clear a baseline picture as possible, so that’s what happened, and yes, the results were as expected and confirmed MS.

My lumbar puncture showed oligoclonal bands and as my brain scan was negative at the time and they had ruled everything else out it resulted in the ms diagnosis.

Hey I was sent to A&E by my GP during my first relapse and they scanned me, pumped me full of steroids and punctured my lumbar spine. The scan and lumbar puncture both showed that it was likely MS as there were lots of enhancing lesions and an oligoclonal band pattern indicating MS. I was lucky in that the LP didn’t hurt too much and I didn’t get a headache afterwards. They still couldn’t give me an official diagnosis at this stage as the consultant thought it could have been some sort of encephalitis. Although another consultant I saw when in hospital took my hand and said ‘i’m sorry but it looks like you have MS’.

strudders wrote:

Gerard wrote:

Hi Strudders I did - was the first indication I might have MS and not a stroke like the Drs initially thought,

Wow!!! Funny you should say that. I had a suspected TIA 6 years ago after coming back from Australia after a 48 hour visit. (work) I lost my speech whilst at my desk and at the time there was not sign of a stroke on my MRI or the carotid angiogram they performed but they put it down to a TIA. As that was all done super quick because I was private, when I lost sight in my left eye I was referred to my old neurologist. He, after months and final MS DX, suggested that, that might have been my first symptom… Thanks for replying. What where your stroke symptoms? If you don’t mind me asking? Strudders

Hey Strudders Mo worries sking at all! I was having dinner with friends and began slurring my speech a little, That night I woke up and had no feeling in my entire left side which was paralysed - my left leg came back in a day, my face which had dropped on the left side came back within a week or so but I couldn’t feel or move my left arm and fingers at all for about 6 weeks - I was in a stroke ward for that whole time and fully recovered after 8 weeks and have never had another attack since (5 1/2 years now).

I had MRI of brain and cervical spine, also had VEP (visual test with electrodes) Finally had the Lumbar puncture - didn’t even feel it! Had a bit of a headache afterwards…kept as hydrated as possible. I was positive for Oligoclonal bands and they then diagnosed me. I think they also check for a specific protein in the fluid but they didn’t find that. Best wishes Andrea

Yes, I had all the tests back in 2008 and dx completed in about 7 mths. Lumbar puncture done whilst in 3 day hospital stay - oligoonol bands found. All tests were positive. Chronic sciatica ever since having lumbar puncture. Never again ! R

Hi, I had lumbar puncture in 1998 in Newcastle straight after my first MRI… Very quick and easy but had to lie flat for rest of the day and drink lots of water. Very mild symptoms all those years ago and only 5 lesons. LP results can back with positive oligoclonal banding - and that’s why I’m here today!! Jen x :smiley:

Like Anita 2k my brain scan was negative but spine showed lesions, I was given the choice of a lumbar puncture but declined it at first. After having further problems it was then suggested that I have the LP and it showed positive for oligoclonal bands and therefore a diagnosis of relapsing remitting MS. Unbeknown to me, the doctor who perfomed the LP was doing it for the first time. It was only when the nurse assisting said to him ‘well done, and on your first time too!’ that I realised. But he was great :slight_smile:

Hi Strudders I too, early on, had a LP which was positive for oligoclonal bands. I wasnt diagnosed then, but was given a 25% chance I could develope MS. It took another relapse for a neuro. to say it was MS. Then my diagnosis was withdrawn when I saw MS specialist! He also noted Positive Hoovers sign, not sure what that is all about too. I then got a second opinion from a different MS specialist a few months later who did more MRI imaging and I was diagnosed again with MS. Not sure how much a positve LP sways a neuro. in diagnosing MS, guess it just depends on the neuro. Wish they all followed the same guideline. Best wishes Heather