Dear All. My lumbar puncture is due on Tuesday and I have been given some brilliant advice through this forum, however, I wonder if someone can let me know…
Why do they do a lumbar puncture? What are they looking for? When will they find what they are looking for? When should I expect the neurologist to get in touch with me?
Thank you so much, Ali
hi ali
a lumbar puncture means withdrawing cerebro-spinal fluid from your spine.
if you have an experienced doctor doing it, it is completely painless apart from a local anaesthetic.
they are looking for oligo-clonal bands which can support a diagnosis of ms.
as for when the neuro will get in touch, how long is a piece of string!
about the time it took to hear the results of your mri.
ask your gp because neuros write to them.
carole x
Spinal Tap
A spinal tap (also known as a lumbar puncture) is a procedure whereby a sample of cerebrospinal fluid (CSF) is taken from close to the spinal cord. At the same time, a blood sample is taken usually from the arm and a quantity of blood serum is isolated. Both of these samples are then processed using a technique called electrophoresis. A positive spinal tap will produce oligoclonal bands in the CSF but not in the blood serum. These bands indicate a type of immune system activity. Although uncomfortable, the spinal tap itself is often not too painful, whereas in the period following the tap, the patient may experience dizziness, nausea, vomiting and severe headaches, occasionally for as much as a week.
95% of people with a definite diagnosis of MS exhibit oligoclonal bands on a spinal tap. This may sound impressive but so do 90% of people with Sub-Acute Sclerosing Panencephalitis and 100% of people with Herpes Simplex Encephalitis among other conditions. Positive spinal taps are indicative of an immunological response but they are not diagnostic for a particular condition. That 5% of PwMS do not exhibit oligoclonal banding means that spinal taps neither rule-in nor rule-out MS.
The primary purpose of CSF analysis should be to rule out other conditions than multiple sclerosis. Although they can be highly suggestive of MS, they do not, in themselves, provide a definitive diagnosis. Indeed, I myself was given a definite diagnosis based on medical history, clinical examination, MRI and evoked potential tests - I declined to have a spinal tap.
Before MRI, electrophoresis of spinal fluid played a major role in supporting diagnoses and underpinned the Poser criteria. Now, however, these criteria have become overshadowed by MRI and, if an MRI is positive, the new diagnostic criteria (2001)allow for a definitive diagnosis without laboratory support. The old “Laboratory supported Definite MS” has been dispensed with. They have just; in the last month; improved the MacDonald Criteria.
However, CSF analysis technology is still advancing and researchers continue to look for definitive molecular markers of MS. Should they find such a marker, spinal taps will reassume their importance. Other researchers are looking into urine and blood for markers and we can hope that they are successful and spinal taps become completely unnecessary to the diagnosis of multiple sclerosis.
George
Thank you Carole. Advice to revisit my doctor makes good sense. Ali x
Dear George, thank you. My fears are that Following two MRI scans, I have two letters from two neurologists. Both state that I have Remitting relapsing MS.
I am awaiting another neurologist appointment but have to have a lumbar puncture first.
Waiting times are long and since the letters were sent to my GP in May, I am worried that I have not started any treatment yet?
kind regards
Ali
Hi Patience .
Sorry for asking like , but if you have had two different neuro surgeons confirming you have rrms , why are you having a lumbar puncture ? Have you been offered any DMTs yet .
Best Wishes Iain .
Dear Iain,
Because NHS waiting lists are so long, I saw a private neurologist in June, following an MRI scan and he confirmed in writing to my gp that I had remitting relapsing ms. He gave a course of steroids. Then the appointment with the NHS neurologist took place and he wrote to the GP and said that it looked like RRMS too and he also offered another course of steroids because symptoms were still bad. He then offered another MRI (August) and lumbar puncture which is happening tomorrow.
I don’t know why the lumbar puncture. At the time I just trusted the neurologist’s advice and assumed that everyone had to have them. Maybe he wants to find out how long I have had ms but I am not certain.
I think if I don’t hear anything after the lumbar puncture, I will phone the neurologists secretary?
I have not been offered any DMTs yet and this is a fear, it seems that things are taking a long time?
Hence my title when I signed up to this forum! And thank you for your concern. Any advice is always welcomed.
Hi Patience.
Im no expert and i may be wrong but a lumbar puncture wont show how long you have had ms , its going to show if you have oligoclonal bands or not , if you do and your mri scan has shown lesions as well , i guess this will tie in with any history of relapses you may have had .
I was diagnosed and my neuro doctor straight away offered me a choice of DMTs , which i can talk over with a ms nurse in clinic .
You need to ask about the DMTs if you have been told you have ms because you will be entitled to them. But to be diagnosed twice and not be offered and then be told your having a lumbar puncture is a strange one , mind there are plenty of folk on here with many many years of experience who will put me right lol .
Best Wishes Iain .
Iain, you have become an old hand in a very short time. You are absolutely right. And patient Ali aka Patience, also knows this. But we are all at the mercy of our various neurologists. So if they want to do an LP before prescribing a DMD, then that is what they will do. At least the time is nigh. And Ali, remember you need to stay laying down for at least a couple of hours after the LP. Take full strength coke, and a bendy straw. And drink it, even if you don’t like it. The caffeine will help to stave off any headache. Not everyone gets it, but those who do really really suffer. I truly hope it’s not too long before you get the results. Ask them tomorrow how long it will be, and how you will be notified. You could also get the contact details of your MS nurse, if you don’t already have them. Henceforth, s/he can then fight your corner for you. And start being impatient. That’s my advice. It’s been too long. Good luck for tomorrow. Sue
Just to confirm the good advice from Sue and Ian; an LP is a diagnosing tool; why do you want to put yourself through that if you have been diagnosed?
Ask your GP to contact the Neurologist and ask why you can’t have DMDs immediately. Too early to say what type of MS you have, RRMS; PPMS.
More than likely RRMS so therefore DMDs. If it’s PPMS they just will not do anything.
George
Thank you all for your advice.
I had the lumbar puncture today …horrid, but bearable and drinking coke as advised!
Things are taking a while which is so frustrating. But I am signed off of work for a while and trying to be healthy. Sadly, I have no services in my county (shropshire) so have to travel to different hospitals out of county. I also have no MS nurse because of this.
My symptoms stubbornly stay the same so I don’t know why both neurologist’s wrote remitting, relapsing? but today I asked the small hospital, registrar (who did the LP) why I was having it and she said although old fashioned, the LP would support the NHS diagnosis fully and he (the NHS neurologist) will probably ignore the private diagnosis? She said that I should phone the NHS neurologist’s secretary in two weeks if I do not hear anything.
As a result though, of all of your good advice, I have made a GP appointment and will ask if they can find out anything more about DMTs.
Without this forum, the early days of MS and of not knowing much, is a lonely place, so thank you again. My warmest thoughts Ali
I got the impression that LP takes it from ‘I think/ believe’ it’s ms to ‘it is’. After my mri’s & Lp I got a ‘probable ms’ Dignoses. Then after evocked potentals ‘results consistent with ms’. Only after a blood test to rule out lupus did I get a definite Dignoses & DMD.
It seemed to me that the experts can recognise ms but can’t move to a Dignoses & treatment without ticking all the boxes I maybe wrong, I don’t have any friends who are neorlogosists but … I sort of feel sorry for them if I am right. My neorlogosist said I was the clearest/ simplest case he had ever had ! Lol, I like to be simple.
Variouse symptoms I had had in the past I put down to either visiol migraines or back issues (I have had surgery). More and more I read on this forum it seems like at an ‘early’ point dignoses is tricky, while later it becomes easy. Hopefully over time the ‘early symptoms’ will be recognised as a Dignoses tool & save people from the nasty progression.
apoligies for my spelling, as well as having ms I am dislexic, ( it being normal for me to get words wrong & have a shit short term memory are my dislexia not ms…lol
Ali, well done for coping with the unpleasantness that is an LP. I do hope you get the results quickly and hopefully can start on a DMD soon. I know sometimes it feels like you might already be progressive because recovery from a relapse is sooo slooow and feels like it’s not happening at all. It’s as well to take a DMD and hope to stave off relapses and disability.
And Sarah, don’t apologise for spelling and dyslexia. Lots of us have doolally brains without having an extra problem like dyslexia. And I’ve read several of your posts and not noticed any problems in understanding them. And I think you’re right. An LP and / or VEP just rubber stamp MS on your forehead. Unless you have a very confident neurologist or are a ‘simple’ case!
Sue
Thanks for all advice. Arrrgh! The headache is horrendous. When there is already so much going on, why then put us through this?! Nose bleeds all day and if I raise my head off of the pillow a ten tonne truck comes crashing in. Anyone know how long this lumbar puncture headache lasts?
Oh no. Poor you. I think the headache varies in length. Do you have drugs to help? Even of the knockout variety?
Does more caffeine help? E.g. Coke?
I do hope it goes soon.
Sue
Hi does anyone know why I’ve received a letter and a blood test from in the post after my lumbar puncture? I had bloods taken after the lumbar puncture but now I’ve received this . It’s says it’s testing for serum in oblicloudal bands? I thought they could see this in the spinal fluid?
Normally blood is tested for Oligoclonal bands (in the serum) at the same time as the LP is done. Basically it’s a different story if you have O bands in both CSF and blood serum to having just O bands in CSF alone.
Maybe the blood test that they did simultaneously with the LP didn’t give clear results?
sue