I’m scheduled to see a neuro ‘within 12 weeks’
ive been told by my consultant ophthalmologist that the mri shows I have a demyelinating disease and there are old and new lesions. He is not allowed to make a diagnosis hence the neuro app.
I am utterly utterly against the idea of a lumbar puncture.
Is it possible to receive a diagnosis on the basis of mri and clinical presentation ?
i will be rejecting the lp so I’m curious to know if it will slow down a dx by neuro
I’ve heard on here people getting a dx without a lumbar puncture - i.e. if the MRI and other clinical evidence point to that, then the neuro will diagnose. Sometimes a neuro will only insist on a LP when there’s some doubt. Having said that, it’s your body and if you’re totally against having a LP then they will have to take what they have.
I hope you get sorted - quickly. I understand it’s awful not having a diagnosis and some clear answers.
Definitely !! I got diagnosed with a MRI following a tingling tongue which wasn’t troublesome really and a bout of optic neuritis. No other symptoms and my neuro said the only difference having a lp is instead of 90% it would be 96%!!! For 6 % I wasn’t going to have it and he seemed happy with that. Must have been convincing as I’m now starting on tecfidera on Monday !! Must admit though my diagnosis seemed easy compared to some on here so maybe it depends on your neuro. Good luck Janet
If you decide against a LP, that is your choice & your neuro will have to decide if he can make a dx without it. I’m wondering why you’re so against having a LP? When I had one a few years ago I was very nervous but can honestly say that I didn’t experience any pain, I was aware that ‘something’ was being done, but nothing painful.
Good luck with your decision, but make sure your neuro fully explains everything to you
Rosina x
I declined, but still went on to be diagnosed.
In my opinion it probably did delay diagnosis by about six months, because it’s my impression he probably would have diagnosed right away, if I’d had it, and it had been positive.
Instead of which, I had to wait six months for a second MRI scan, which showed new activity, and allowed him to be sure enough.
On the other hand, if I’d had the LP and it was normal (which can happen, even if you do have MS), we would have been no further forward, and I’d have had it for nothing (one of my objections to having it - although a positive result greatly increases the evidence for MS, it cannot categorically prove it - whilst a negative result does not mean the person cannot have it, and therefore may not help the investigation whatsoever).
Personally, I wasn’t that bothered about the six months, as I believed, and still believe, I’d already had MS (or whatever “it” turned out to be) for years.
However, I know many people are desperate for a diagnosis, and my: “six months is nothing” line of reasoning may be a little unusual, to say the least.
Obviously, it wasn’t a very nice six months, but I was pretty resigned to it by then that it was MS - just a couple of scares when it briefly looked as if it might be something even worse! If you’re convinced you’ve already been ill for years, the concept of “acting fast” is a bit lost on you - six months no longer seems like a big deal.
Tina
I think it depends entirely on your particular circs. If you have MS written all over you, there shouldn’t be any problem or delay whatsoever. Sometimes, neuros want LP results on the record, even in a straightforward case, just to make the dx super-secure, but it’s not normally essential. If your case is a tricky one, it might be a bit more complicated, but there are ways around most things. If you don’t want an LP, you don’t want an LP. That’s fine. No one is going to make you. It’s still a free country.
Alison
My reason is entirely that stated above: I know I have it. The symptoms confirm it. The mri proves. It seems like an unnecessary extra hurdle just to get a dx.
Ive had past symptoms ive brushed off. I suffered from anxiety disorders and uk gps seem to think of them as an absolute godsend for laziness - everything becomes a manifestation of stress. I’m eager for a dx to prove, if nothing else, that I’m not mad and that the things happened to me where not all anxiety and stress
It seems odd that to raise from 90 to 96 percent certainty that they would poke a hole through your spine and take fluids… It’s such a horrible sounding procedure but I do know there’s rarely complication. My adversity towards it comes from the lack of knowledge gained from it. We shall see how it goes with the neuro when I get my appointment.
Im also doing a clinical trial into optic neuritis with a clinical expert in the field so I will ask his opinion when I see him next week. I’ll also get to see my mri. Something more people should get to do.
Optic neuritis and l’hermittes was my first symptoms and only ones thus far ( some left side burning too. But only when I’m tired and move my neck in certain directions.)
thanks for the responses and support.
If it helps, I was diagnosed without an LP but then my foot drop, uncooperative arm and what my Neuro described when referring to my MRI as a “bit of a mess in there” was enough info for him to call it.
Having said that, if an LP had been required I wouldn’t have refused it, they often need all the evidence they can gather to be absolutely accurate in their diagnoses, as it’s their ar$e that’s on the line if they get it wrong.
Good luck with whatever the outcome is.
Paul
hi
i had an adverse reaction 4 days later when i woke up being sick even though hadnt eaten much that day.
it is quite unusual but i’ve always had freaky things happen which makes me wonder if i’ve had ms for longer than i thought.
ah well
carole x
This did make me laugh out loud. Hurrah for neurologists who tell it like it is!
You also made a good point about extra evidence. Getting a wrong dx is all kinds of bad (as people on here who have been dx with something else when it was MS all the time know). Once you have the wrong label, things can veer off-track pretty fast: it is human nature to try to construe everything thereafter to fit that wrong dx, and clinicians do this as well sometimes, because they are human too. That’s why they are so keen to get it right first time. So it isn’t OCD tidy-mindedness that inclines them want all the evidence they can get.
Alison
A LP sounds worse then it is, I was always terrified of needles, for years but this was fine 3 local anaesthetic needles just felt a slight sting, then big needle went in didn’t feel a thing just a little uncomfortable but as soon as he saw he moved the needle and it was fine, they talked me through every step, and a nurse asking me if I was ok.
my mri showed inflammation typical brain lesions on his report, but I still had to have vep and LP I could have declined it but I just wanted it out of way, it was fine I was a little sore but I’ve had worse pain it was minor like tender I was diagnosed 2 months after LP.
i was so nervous about the LP but it was nothing if I had to have another I would because it wasn’t bad at all.
I was feeling just like you about having a lumbar puncture. I finally gave in an agreed to have one. I know there will be exceptions but for me it was a very easy experience. I had the LP done on a Wednesday and apart from a little sting when the anesthetic went in there was no pain at all. The only feeling I got was a pushing sensation in my back like someone was pushing with their thumb. My husband watched what they were doing and we were both amazed at the colour of the spinal fluid they took out. It was so clear! The way I described it was it was like unicorn tears
I sat in bed almost immediately after and they gave me tea and toast. No headache at all and the next day I went on holiday!!
It was confirmed I had the bands and the diagnosis of MS was made.
Now I am soon to start on beta-interferon injections which I’m not looking forward too
But I’m glad that I had the LP done as it has made diagnosis much quicker
Hi db9355,
You have an absolute right to reject an LP if you don’t want one.
The “gold standard” for MS diagnosis is the “McDonald Criteria”:
and you don’t have to read too far to see that an LP is an alternative to an MRI (given certain conditions)
Like Tina said, it may speed things up to have one, but it is not mandatory.
I had one, rested for an hour, walked across the hospital for a blood test sample - and drove 30 miles home. Others have had different experiences.
But, just remember - it really is your choice.
Geoff
Met a consultant today as part of my clinical trial and he said that the MRI showing t2 lesions plus the optic neuritis plus previous clinically significant symptoms plus l’hermittes means he would strongly suggest the lp will not be required.
It is not the lp itself that puts me off - it’s the pointlessness of it. As above poster mentioned, it’s not actually required for clinical dx so there’s no reason to put me through it.
The clinical trial consultant is going to write to the consultant for me to present the case and their findings of rrms. He will also suggest a spinal mri due to my symptoms presenting upon neck movements.
Im getting there…
I at first refused a lumbar puncture, but very much later agreed to it.
The test was negative - no oligoclonal bands.
However, I was given a confirmed diagnosis of MS based on repeat MRIs of brain and spine; EVPs; a medical history and numerous blood tests to eliminate mimicking conditions. It was a lengthy process.
I’m not sure if the LP was used to help in eliminating any other conditions or not.
Good news, although it still seems back-to-front to me that you should need a justification of why it is NOT needed.
The wording of the NICE guidelines makes it appear it should be the exception, rather than the rule, and that where other evidence is compelling (as yours appears to be), it should not be necessary at all.
I don’t understand why this is still being interpreted, in the vast majority of cases, as people should have a LP, by default, instead of only where there is particularly vague or conflicting evidence.
Tina
LP is not necessary for a diagnosis.
LP results can be potentially misleading / contrary.
LP results can be retained for future reference whether you’re diagnosed or not.
Doctors are scientists and thus have the logic, the only thing better than data, is MORE data.
However, if the MacDonalds criteria has been satisfied and all that is being sought is a diagnosis, then a LP is superfluous (even if your average doc doesn’t like to be told “no, i won’t have it” 
)