Question 3. WAS ANYONE DIAGNOSED ON THE BASIS OF A LP ALONE?
Hi Boblatina,
No, no & no.
I am beginning to wonder if mssufferer is on a wind up. If not I am not sure what they want to get from this forum as he/she seems determined to disagree, contradict and undermine the various replies they have recieved from those who have done their best to respond according to their experience, have gone through the process and are sharing those with someone they see reaching out for assistance.
I appreciate he/she may be genuinely anxious & worried, but to denigrate the well meant advice they have been offered by those who have already experienced the process of arriving at a diagnosis, if not a wind up, seems counter productive and a bit of a waste of time.
x
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You might be correct but I couldn’t possibly comment 
What I have noted though is that they have started 3 threads, the first of which was about a vision problem but was entitled DEPRESSION. No mention of mental health concerns in the body of that thread or the other 2 but there is a distinct undertone of MH issues so I reluctant to start shouting “Troll!” - yet
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I had a MRI then after it had been sent to someone else to look it over i was invited to have a LP on his findings, i found the Lp not the best way to spend a morning but all in all not a problem, i chose to have the LP because if that could possibly help with a diagnosis either way it was worth it, it came back clear if i am being honest i find the posts about “death” and “its all over” offensive and inconsiderate as well as lacking in true information for those who have a real diagnosis and are living with MS !!
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[quote=“sue1”]
I had a MRI then after it had been sent to someone else to look it over i was invited to have a LP on his findings, i found the Lp not the best way to spend a morning but all in all not a problem, i chose to have the LP because if that could possibly help with a diagnosis either way it was worth it, it came back clear
[/quote] what did you have if not ms?
QUESTION 4. Was anyone diagnosed WITHOUT LUMBAR TAP?
The main problem with lumbar tap is the pain and discomfort and headache all of which can be of varying degrees and completely unpredictable. Lumbar puncture is not a perfect test. It MAY provide further confirmation but as Boblatina points out, mri is done first and that is the main test.
Mri itself is not risk free, it also has drawbacks.
Sssue is wrong about the need to lie down after a lumbar tap its a myth.
There’s always two sides to a story. There are many people who suffered horrific pain from these wicked procedures.
I am CIS and may stay that way, i chose to have the lp because if it had come back positive i would be further on to a diagnosis and medication if i in fact do end up with an ms diagnosis, i am what you call in limbo, what i think most people are shocked and offended by in your posts is your negativity, try and look at it from others point of view who know they have this illness after all the tests and are living with it daily, nobody wants to be abrupt with you but you are sometimes rude and inconsiderate with your posts, i really hope you get answers but you need to firstly see someone who is trained and able to diagnose google is not that person.
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Well I’m not wrong if not everyone lies down and not everyone gets a stinking headache. Which I believe is the case. Although it is now the advised way to avoid the headache. An LP is not in and of itself a ‘wicked procedure’ and I really don’t know where you get the idea that it is. Do you personally know someone who has suffered more than a headache after having one? Do you know for an absolute, provable fact that a lumbar puncture is of no value in diagnosing MS?
Hve a look at the NHS information about lumbar puncture: Lumbar puncture - NHS
Perhaps something that no one has yet mentioned is that MS is not the only thing that can be identified from examination of the cerebral spinal fluid. It is a diagnostic tool. Yes, sometimes people are diagnosed with MS without an LP, but that is because their clinical symptoms, physical exam, VEP and yes, MRI(s) are sufficient without looking for the presence of O bands in the CSF. But equally, sometimes doctors actually like to be able to prove their diagnosis. And that is something which an LP can help with.
Now I believe I have said my last piece on this subject.
I wish you well ‘MSsufferer’. I hope you are tested in whichever way you are happy to be tested. And that you are not proved to have MS. But in part I have to admit that I hope you don’t have MS, because if that’s the case, perhaps you’ll not continue to argue pointlessly on this forum.
Sue
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[quote=“Val”]
No she is not wrong, I’ve just had a look on the NHS website for you… headaches are typically relieved by drinking plenty of fluids and lying down after a lumber puncture.
[/quote] it’s a porky. https://www.acep.org/Clinical---Practice-Management/Focus-On--Post-Dural-Puncture-Headache/
Convinced it’s a wind up and loving this game. Don’t feed the Troll. I have reported the aggressive, confrontational posts. Surprised they’re still ongoing.
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[quote=“Ssssue”]
Well I’m not wrong if not everyone lies down and not everyone gets a stinking headache. Which I believe is the case. Although it is now the advised way to avoid the headache. An LP is not in and of itself a ‘wicked procedure’ and I really don’t know where you get the idea that it is. Do you personally know someone who has suffered more than a headache after having one? Do you know for an absolute, provable fact that a lumbar puncture is of no value in diagnosing MS?
Hve a look at the NHS information about lumbar puncture: Lumbar puncture - NHS
Perhaps something that no one has yet mentioned is that MS is not the only thing that can be identified from examination of the cerebral spinal fluid. It is a diagnostic tool. Yes, sometimes people are diagnosed with MS without an LP, but that is because their clinical symptoms, physical exam, VEP and yes, MRI(s) are sufficient without looking for the presence of O bands in the CSF. But equally, sometimes doctors actually like to be able to prove their diagnosis. And that is something which an LP can help with.
Now I believe I have said my last piece on this subject.
I wish you well ‘MSsufferer’. I hope you are tested in whichever way you are happy to be tested. And that you are not proved to have MS. But in part I have to admit that I hope you don’t have MS, because if that’s the case, perhaps you’ll not continue to argue pointlessly on this forum.
Sue
[/quote] People are not SOMETIMES diagnosed by mri. People are MOSTLY diagnosed by mri. Theres a difference. Regarding headaches and lying down if you do your research you’ll find the evidence was that it doesn’t work.
Magnetic resonance imaging (MRI) is the diagnostic tool that currently offers the most sensitive non-invasive way of imaging the brain, spinal cord, or other areas of the body. It is the preferred imaging method to help establish a diagnosis of MS and to monitor the course of the disease. http://www.nationalmssociety.org/Symptoms-Diagnosis/Diagnosing-Tools/MRI
With the greatest respect I would suggest that you require read ALL of the paragraph you have just posted and understand what it says. Essentially they are saying MRI is the best way of IMAGING the brain without being physically invasive (in other words without opening up the skull and taking slices from the brain!). It is the preferred way of IMAGING the brain when going through the diagnostic process for MS. What it does not say is that MS ONLY requires IMAGING for diagnosis to occur.
As I said the other day diagnosis of neurological conditions is like completing a jigsaw puzzle. You can’t do it with just a single piece (eg a single MRI or LP). You need enough pieces to determine what the picture is. When there are enough pieces there a diagnosis could be made. It isn’t a tick box process where you have to have A, B and C present to have a diagnosis, it is a decision based on what is discovered and how they relate to each other in your individual case. Therefore, some people can be diagnosed from multiple MRI scans and little else but for many others, the way the condition advances means that waiting for a sufficient change in the results of imaging might cause an undesirable delay in diagnosis.
Added to which, whilst MRI scanners are brilliant and getting good better, there is still a possibility that small further lesions can be missed by the scanner because of the thickness of the image “slices” so a 2nd MRI could provide a false negative.
I’d like to see some evidence for the claim that an earlier diagnosis of MS provides a better longterm outcome. As far as I know Ms is permanent and incurable. It is also very challenging and poorly treated. Drugs have horrible side effects as all do. It’s a highly unpredictable condition which you just have to suffer.
Had a mri and it was inconclusive, then had a LP which to be honest was a bit unpleasant but no worse than many other medical procedures. As far as I’m concerned it was a means to an end. I got Dx SPMS and because it’s progressive I don’t get any dmd. I’m very much living with MS not dying.
I do find your attitude a bit weird and not sure where you are getting your information from.
Mags xx
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What are you havi g trouble comprehending here? The majority of people diagnosed with Ms have RRMS (objectively verifiable fact). People with RRMS have relapses that cannot be predicted for time, duration or severity (objectively verifiable fact) There is a lot of evidence that that DMDs reduce the number of those relapses (objectively verifiable following medical research and peer reviewed studies. Barts MS blog is a good place to start). For every relapse avoided damage is avoided (inescapable logic on evaluation of evidence). No DMD without diagnosis (factual situation for NHS patients - see current NICE guidelines) Early diagnosis means you can start DMD sooner therefore giving you a chance of avoiding a relapse and accompanying damage.
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Or to put it another way. You are in a gun fight. You can’t get away from the shooter but you have access to a bullet proof vest that can stop some of the bullets. Do you put the vest on now or wait until you are shot again?
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