Hi all!
I have been diagnosed with MS by a private neurologist but because my Bupa doesn’t cover medication I have to now go through the NHS. I saw the specialist nurse today and she has told me that the NHS neurologist wants me to have a Lumbar Puncture and another hour and half MRI to make sure it’s MS even though my private neurologist has said it is! I really don’t want a Lumbar Puncture, has anyone else had the same issue?
Hi ZoeJane,
I don’t know anything about Bupa and have never seen a neurologist privately, but thought my story re LP might interest you.
Like you, I really didn’t want a lumbar puncture. I held out for a very long time, but did eventually agree and took the test.
The result was negative, but less than a year later, after repeat MRI scans and a relapse, I was diagnosed with MS and informed I’d had it for about thirty years (there’s a back-story here, but I’ll skip it.)
I believe that if the LP had been positive it would have speeded up the diagnosis a little, that is all, although maybe the speed would have been welcome, after all, the testing process is rather tiresome and I was becoming impatient.
Since then, I have read on the web (so it may not be accurate) that 10 to 15 per cent of MS patients are diagnosed after testing negative on LP, and a significant number of people are diagnosed without ever being asked to have an LP in the first place.
Maybe you should ask the nurse if you could discuss things with the neurologist before proceeding. There may just be a way forward without having an LP.
Ben
Zoe you don’t have to get a LP for MS. My neurologist used to do it, now he doesn’t as he says its not an accurate enough tool and can be more confusing.
For me it was. I had one and it showed loads of O bands for MS enough to easily give me a diagnosis, BUT my issue was the blood test you have to get alongside the LP. It showed high inflammatory markers, which makes it negative for an MS diagnosis. When i FINALLY got diagnosed with a second VEP test nearly 10 years apart from the first positive VEP test and the lesions in between, I did query the LP results and said to him, so really then the O bands were the marker for MS and the bloods were showing my other issue which turned out to be a co infection of Lymes disease which screwed up the test and a very bad case of Epstein Barr Virus.
He said it is difficult with the LP and its very invasive and he doesn’t use it now for MS diagnosis. I was quite privileged as he said my case had changed the way he saw MS in people as everyone presents differently.
anyway my private doctor told me in 2008 i had MS but like you NHS would not take this as confirmed so i had to keep going with my NHS neuro. We got there in the end.
BUT its ridiculous if you have been diagnosed by BUPA neurologist then you shouldn’t have to do all this. What tests have you had? You can let your NHS doctor have copies of all the test results surely that should be sufficient.
I would refuse it personally as it is invasive and it put me on my back for 3 weeks. Having the LP was fine, it was the aftermath for me. Probably stress related.
Yes i was diagnosed after a negative LP (see my answer to Zoe).
Zoe like you I was not comfortable about having an LP and voiced this to my neurologist. He did not put me forward for this.
Thank you both you’ve really helped. I am 28 and had my first MRI in March this year, I then had my follow up MRI 6 months later (so September) and there were 2 new lesions on my brain and one on my neck, my first MRI showed 4 lesions on the brain and 2 on the spine so there has been progression within 6 months and this is why I was diagnosed. I am going to call my private neurologist today and ask if there is anything they can do as an LP doesn’t seem nesscesary to me! Thanks again 
I think thats the best thing to do Zoe, you obviously have activity going on and i think an LP is totally unnecessary only from what my neuro told me and he has been a neuro a long time and now never offers it.
I think its daft to be honest that the NHS is doing this when they are moaning about the cost of things it will cost a lot of money for you to have all these tests done totally unecessarily. x
Hello,
Just to add my voice to the others. I was diagnosed privately without a need for an LP - and did not need one when I transferred across to the NHS for treatment. My understanding is that MS should be diagnosed via the updated MacDonald criteria - under which a positive LP result is neither necessary for sufficient for diagnosis (although it can add supporting evidence). The criteria required evidence of disease activity disseminated in space (lesions on different but of your central nervous system) and time (lesions appearing on two or more sperate occasions). The evidence for these can be gathered from MRIs and medical history re. relapses. I was capable of being diagnosed off of a single clinical episode (numb toes) and single MRI which showed lesions in lots of places, and simultaneously enhancing new lesions sat alongside old ones. A further MRI which showed one new lesion (no new symptoms) showed my disease was active and unlocked the cupboard with the Lemtrada (my first line DMD of choice).
I would ask your neuro why they think an LP is necessary to confirm the diagnosis, with reference to the Macdonald criteria.
I should add, whilst I was delighted not to need one I think I would have had one done if my neuro had recommended it and it speeded my progress to getting on treatment. Whilst there are a few scary stories, there are also quite a lot of posts from people who found the procedure ok.
Good luck!
I agree with Katy79 that I would have one if it speeded up my diagnosis.
Just to put your mind at rest, I had a couple of lumbar punctures for suspected brain bleeds and although it isn’t the best way to spend a day, I had no horrendous side effects.
However, in this day and age as the others have pointed out I would question its importance.
Hope this goes speedily for you and you get on treatment soon… Keep us posted
love Gilly
Thank you, I have asked to be referred to a different hospital with a Neurologist that uses the McDonald criteria. I believe I’ve had enough symptoms the last year to not have an LP and with my MRI’s to back it up. Thank you all again xx
I had 2 MRI’s in 3 months which showed progression and still had a LP, which came back negative but I was still diagnosed with RRMS! Im really nit sure why they bothered with it, unless it was to guve a junior dr a bit of experience and for what it’s worth, he needs a lot if pracitse!!! That was 11 years ago. Good luck Sharon x