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Is their any SET RULES for being DX with MS ?

Hi All

You’s may of seen my last thread “my neuro won’t committ himself to DX me”, I also stated in that thread “my wife works in the same hospital as my neuro”, anyway she bumps in to him and he remembers her & me and says.

“he has not long worked in the UK, had I lived in USA or Canada (were he came from) I would of been diganosed last week on what he found on my MRI, since moving to the UK things are different in the hospital he works in now, once evidence is found in a MRI the patient MUST then get a lumbar puncture to get a DX, he has to work with his hospital criteria frustrating as it is, that’s why your husband could see I was uncomfortable at the appointment”.

Is their other hospitals in the UK working differently to each other ? As in have you been DX with only a MRI recently ?

What happens if my LP don’t show nothing ? But folk have been DX in the past without anything shown on all test ? :?:

It seems everywhere does things differently, and the patient suffers with the time it takes. :frowning:

Is this all down to cost :?: I think so.

Cheers Stephen.

I do think that different hospitals (and neuros) have different rules, but the official UK diagnostic criteria are written in the NICE full guidelines for MS (CG8). A lumbar puncture is NOT necessary according to these, and to the latest McDonald criteria, however a positive LP does add weight to the diagnosis (and a negative one means that the neuro should proceed carefully).

The basic fact is that LPs are not 100% accurate for MS. If they were, then there wouldn’t need to be any other tests! I’ve seen different numbers in different reports, but it’s probably fair to say that somewhere between 5 and 15% of people with clinically definite MS do NOT have a positive LP.

I really can’t understand why this would be happening at your hospital. There definitely are people who have been diagnosed fairly recently without LPs - Tina (Anitra) on here is one. Perhaps they are doing it for fear of lawsuits? Perhaps the head of neurology is a wimp?(!)

Because an LP isn’t a definitive diagnostic test, you would probably have a decent legal argument to either opt out of one or to argue against a negative result denying you a diagnosis. I hope it doesn’t come to that though!

Karen x

My hospital in Scandinavia uses 3 main tools to diagnose - a neuro exam, an MRI and an LP. But they’re very clear that both the MRI and LP can offer results that may be as a result of another illness and therefore on their own, cannot be used as an 100% diagnostic tool. I had the symtoms, the positive MRI and a borderline VEP result. They tried an LP and botched it badly :confused: My doc said that I was well within my rights to refuse a further LP. While I was borderline on most of the other results they were willing to give me a ‘probable’ diagnosis without definitive LP results.

All in all, MS can’t be just diagnosed with a simple blood test (if only it were that easy!). I can understand docs reluctance with new diganosis unless they have as many ‘positive’ test results as possible. Some docs and hospitals find that the results or evidence they already have is enough to make the call, others want an LP to confirm their suspicions.

Hi Stephen,

Totally agree with your comments - this is part and parcel of what is causing so much confusion for me in terms of expectation.

I recall reading accounts of people who have received positive DX of MS based purely upon medical history and following clear MRI results :?:

Hi Karen.

Just read your reply and the bit that jumps out to me is “GUIDELINES” this makes any subject a grey area, hence it comes down to hospitals (in this case) working differently to each other so they don’t end up with a law suit took out against them :-(.

People have no doubt over the past years been misDX and sued hospitals, but we are in 2011 medical sicence and tecnoligiy have improve sure in this day and age their should be an rethinking and instead of having “guidelines” have something set in stone then their is no more grey areas ?

Hi Irskdanks.

I understand what your say, but I can’t get my head around how people have been given a DX without LP, MRI , or electrode test shown anything.

Confused.com :slight_smile:

GremlinInside wrote:
Hi Stephen,

Totally agree with your comments - this is part and parcel of what is causing so much confusion for me in terms of expectation.

I recall reading accounts of people who have received positive DX of MS based purely upon medical history and following clear MRI results :?:

Hi.

Yes these stories do send out mix messages, if you read my original thread “committ to DX MS” my neuro that day stated “it’s down to cost” I believe it is now after what he told my wife, if my LP don’t show anything up I will be left in limbo thus delaying and saving my region money on these DMD’s that I maybe entitled to as in his words “I would of had a DX had i lived in USA or Canada from what he saw on my MRI”.

I don’t want MS or anything else for that matter, but am worried that I am being delay treatment am not getting now which could be making me worst in the long term.

Hi Stephen,

As Karen has already said, there are defined rules, and she has given you enough leads to Google at your leisure, so you can have a read.

Personally, though, I don’t think it has anything to do with cost. I do, however, think you have an idiot, inexperienced neuro, who apparently isn’t familiar with the official guidelines in this country, and has inappropriately put forward a “cost” argument - apparently due to a mistaken understanding. I also think he’s acting totally unprofessionally by discussing a patient’s case with their relative, outside the consulting room. Now I know you may not mind, and even think it’s “handy”, as they work at the same hospital, but two wrongs don’t make a right. Realising the consultation hadn’t gone well, and attempting to explain himself to your wife, when they met in another context, is totally wrong. Smiling and asking: “How is your husband?” would have been acceptable, but not getting into the specifics of the case, and whether or not he agrees with them.

I would be absolutely incensed if this happened - even if the relative were one I trusted, and the information gleaned quite interesting. Because I’d be wanting to know: “What the heck were you doing discussing this, with my relative, when I wasn’t there?” It makes no difference that you “probably” wouldn’t have minded. The consultant has no right to decide this for you. Even if your wife attended your last consultation, it doesn’t prove that you gave ongoing permission for him to discuss the subject any time he happens to bump into her. For all he knows, you might have had a row last week, and filed for divorce! This is wrong.

Anyway, back to the LP. Yes, as Karen says, I was diagnosed without one. BUT, it’s important to understand that, LP or not, you still won’t be diagnosed until the evidence is sufficient. One scan result wouldn’t usually be enough, even where there are clear lesions. My initial scan results showed pretty “classic” evidence of MS: six lesions in my brain, and one in my spinal cord. This satisfied the “dissemination in space” requirement (lesions in two or more separate parts of the CNS). But didn’t satisfy the other diagnostic requirement of “dissemination in time”, because we couldn’t prove the lesions hadn’t all materialised at once, from a single episode.

So, what we did was wait six months, and scan again, at which time new disease activity was apparent. So my neuro could confidently say, at that point, that it was an ongoing problem, and not a one-off incident. This is necessary for an MS diagnosis. There’s no doubt my neuro would have preferred me to have a LP, if I’d given permission. But one of the reasons I declined was that it could come out negative/normal, and we’d be no further forward. I didn’t want to go through an invasive test that might not prove anything.

I’m not sure it would have resulted in immediate diagnosis, even if I’d had one, and it was positive. Because I think I’d still have had to wait for more lesions to show up, or for another clinical incident (relapse). This isn’t a money thing. It’s just to make sure you really do have it. I suppose money is one reason that might be important, but certainly not the only reason! Being diagnosed prematurely, and potentially receiving a WRONG diagnosis, is pretty serious for the patient too. If it came to a choice, I’d rather have a correct diagnosis than a fast one, but wrong.

Tina

Hi Tina.

Cheers , my wife was the one who asked the questions ad the neuro did ask “how was I keeping”, to be honest I did not bother me when she told me this as I know she was only trying to help and to be fair what he told her was a better explanation as to why the LP was to be done, he never explained this properly the first time around, also he clearly was uncomfortable in the room that day it was clear to see.

I understand your reasons for DX being or made or not being made, it’s just frustrating that you read mix messages on people getting DX and how my hospital criteria to getting a DX states “a MRI must be followed up with a LP to get DX”, this came from the neurology department when I called to find out more info, again the “cost” was mentioned on the phone, two separate people from the same hospital said the same thing, it kinda makes one think.

Thanks Stephen.

I got diagnosed by 2 mri’s. I did have a lumber puncture but they stopped as they couldnt find space in spine. From 1st mri there was a few spots on brain im sure it was then he said he was 90% sure i had ms but he had to do further tests because a few lesions showed on spine from second mri i did not have to go for lumber puncture he could diagnose me from those two mri’s. Im sure you have to have atleast two tests that show things. Im not entirely sure other people on here will know better than i do.

Hi
I was diagnosed 5 yrs ago with 1 MRI and after attempting LP’s on 4 occasions unsuccessfully, I was diagnosed. This happened whilst I was in hospital having a relapse - I had no idea about MS and hadn’t considered I may have been suffering from anything so serious. So, yes, you can be diagnosed without a LP.
Hope you get sorted soon.
Take care
Ashlee

I know its a very traumatic going through the stages towards getting a DX or not. I have to think myself lucky compared to some stories. I had an MRI 2 days after my first symptons (they thought I had had a stroke) and was diagnosed with MS just hours after that - although I was told by my neuro that he heavily suspected I had had MS for many years (I was 24 at the time) due to the amount of lesions on brain and spine… That was 2 1/2 years ago. In the time since I have started REBIF along with many an other drug and had one more MRI with some dye in my arm.

I know its a very traumatic going through the stages towards getting a DX or not. I have to think myself lucky compared to some stories. I had an MRI 2 days after my first symptons (they thought I had had a stroke) and was diagnosed with MS just hours after that - although I was told by my neuro that he heavily suspected I had had MS for many years (I was 24 at the time) due to the amount of lesions on brain and spine… That was 2 1/2 years ago. In the time since I have started REBIF along with many an other drug and had one more MRI with some dye in my arm.

Hi
There are 3 tests.

Evoked potential

MRI scan

Lumber punch

Any 2 have to show posotive

Ronin

I had a positive MRI and a positive LP which was done after I presented with left leg difunction and balance issues.
I had to wait and struggle on for 2 years before my next MRI which showed an increas in the number of lesions.
By which time I had gone deaf in my left ear and my walking had got much worse.
Now I have a dx of MS, but reading this blog makes me think that the attention that I received was not that great after all.
Have I gone through the variouse stages of MS that may have been treated straight to PPMS…
I am very confused by this diagnosis process and a little angry too.

Tony

Hi, neuro said to me that if there wasn’t such a test as an LP he would dx MS, but he wanted to do LP to confirm it. The LP was positive and I got a dx of PPMS.

From a few years reading this forum, it does seem to vary a bit from hospital to hospital, but generally it seems to be a combo of symptoms, MRI results and finally LP result, and yes some people get a dx without LP or with a negative result on LP. I think this happens when there are lots of lesions showing on MRI and symptoms are very obviously MS.

Pat x

i had an MRI then a LP two weeks later. the LP test come back negative. some 3 months later i was back in hospital and had another MRI. the second MRI showed new activity/lesions on my brain which led to the MS diagnosis.
i count myself as lucky regarding a pretty fast DX as some people have being in limbo for years and years. must be terrible thing waiting that long for DX
i do hope you get sorted soon.
it ridiculous that your neuro menchions money!

I was diagnosed in 1990 with a lumbar puncture alone. (I think there was one mobile MRI cambera in the country at the time, I was told!)

But my neurologist, who also did a lot of research into MS, said the only absolute way of diagnosing MS at the time was by a post mortem, which he didn’t recommend at that particular time?! I have since had an MRI which the hospital promptly lost, so I don’t know whose guidelines my doctors were following but I got diagnosed somehow!

ronin wrote:
Hi There are 3 tests.

Evoked potential

MRI scan

Lumber punch

Any 2 have to show posotive

Ronin


Sorry Ronin, but that isn’t true.

I am diagnosed on MRI evidence + symptoms ONLY. My VEPs were normal, and I never consented to a LP.

They like confirmation from a second test, but it isn’t always necessary. I don’t think you would get diagnosed on VEP or LP alone. But MRI evidence is very compelling.

Tina

I also only had an MRI and symptoms… MRI showing lots of lesions with symptoms initially, then diagnosed on basis of further symptoms a year later. No other investigations. As someone said, signs disseminated in space (ie different lesions on MRI), and in time (symptoms a year apart). I count myself lucky to have a sensible neurologist and that I didn’t have to have an LP/VEPs to get a diagnosis (don’t count myself lucky on the diagnosis mind you, much preferred my own diagnosis of a trapped nerve in my elbow!!).

I work in a hospital, and have been involved in writing guidelines. They get written based on research and the personal experience of the doctors involved. They are, however, just guidelines, not set-in-stone policy, and try and cover a whole population. Obviously everyone is individual, presents differently, and needs slightly different things dependent on the situation. The trouble comes when people stick rigidly to guidelines.
The McDonald criteria are fixed and accepted as diagnostic criteria… It’s just how to get the evidence of those criteria in individual people that the differences in investigation happen.

Hi, I was diagnosed at the end of 1995’, a long time ago, so things may have changed, but I was diagnosed on symptoms alone, albeit many symptoms over a period of about 6 years. There was really no where else to go but to diagnose ms. Betaferon was newly licensed and the nhs were not prescribing it but I asked and neuro made a special case and I got it. Then he started me on it and said we should do an MRI just to have something in my records so for a few months I was on betaferon by being diagnosed on symptoms alone.

One more thing, until I was prescribed betaferon, I was private. Of course, they don’t have different criteria for diagnosing privately but I think it helped me to get some action more quickly.

Cheryl:)