Anyone out there diagnosed with a negative lumbar puncture?

[aspen2]

I see on the NMSS website, and hear all the time, that a negative LP can not rule out MS completely.

However it seems to me that it is pretty important supporting evidence.

Anybody here diagnosed with just MRI and clinical evidence?  (And you HAD an LP but it was fine vs. you MRI was a shoe-in so LP wasn't required.)

Curious. Thank you :).

[immisceo]

Lumbar puncture results are relied upon far less these days than previously, particularly as the availability of decent MRI availability has improved.

Oligoclonal banding in the serum cancels out the numbers found in the cerebro-spinal fluid. For example, 3 in the blood and three in the CNS = zero unique o-bands and a negative result. 2 in the blood and 6 in the CNS = 4 unique o-bands and a positive result.

Signs of inflammation in the CNS simply points to an immune response. It is not specific to anything, in and of itself.

For better or worse, some neurologists are just more conservative in their willingness to diagnose. And many will still always go back to clinical observations as their most valued diagnostic tool. The drugs we use are not appropriate for those with other conditions, and we've seen ourselves on the forum the psychological toll that having a diagnosis of MS and then have it retracted can take. In this context I think the conservative approach is understandable, though obviously some neurologists err too much on this side of things too.

All the more reason to cross our fingers for a future with a clear-cut test using biomarkers. I currently have my own tissues in three studies on this topic, so they are working on it!

[aspen2]

Thank you for contributing to these studies!  I actually found  very interesting research on OCB-negative ms -- that it may be an immunogenetically distinct variation.

This is where my situation is confusing -- my neuro has no doubt that symptom/sign wise, it looks exactly like ms.  It took him 2 years of following me to get there.  The negative LP threw him.

[crazychick65]

I had 3 lesions on my spinal cord, a positive VEP, and then i had a LP. The neuro said that although there were O Bands present the blood test alongside the LP showed inflammation which is a negative for MS.  So i never got my diagnosis then, even with all the clinical signs, lesions, and ON.  I did eventually a few years back. I have other issues now too.I did get diagnosed with a Lymes co infection, and the neurologist believed this was muddying the results of the LP.  Anyway I have since read that really with the O Bands present in my LP, I should have been given a diagnosis, even with the inflammation in the blood as it could have been caused through other issues which it was. What is the point of having all these tests come back positive, then to get one slightly off key and it comes back negative for MS.  MS is so hard to diagnose and lots of people get misdiagnosed with other things, like FIBRO lol...or M.E. give me strength. CC65

[aspen2]

Yes, give me strength :).  I believe that if you had had my neuro, you wouldn't have had the LP -- he relies very heavily on spinal cord lesions from what I see.

[HVAC]

I do not know much about o-bands. My doctor did say in my case 12 o-bands meant I have had MS a very long time. He said they are like tree rings. I am not sure if that is true. Since I had my first documented attack in 1965 that seems plausable.

Alex

[zerodegrees]

My LP was normal.

I had a ton of lesions on my brain, and also had them in my spinal cord. Along with everything else being ruled out and my symptom presentation of course I was diagnosed.

[aspen2]

Thank you for sharing, zerodegrees.  No o-bands even with spinal lesions -- I had wondered o-bands were more likely to show up with spinal lesions present.

[HVAC]

My neurologists would not diagnose me with MS until I had an abnormal LP. Luckily I had 12 o bands on my first one. They told me they would do repeated LPs until they got an abnormal one.I put off having it which delayed my diagnosis by two years.

Alex

[aspen2]

Thank you, Dennis.  My neuro considered it a rule-out (negative LP) so I was just curious, based on what I read at NMSS.  Good information.

[Sailorsong]

There are several members of this forum that have gotten a DX for MS with negative LP tests. I am one of them. In fact I actually had 2 LP's done and they were both negative.

The supporting evidence is only if you have a positive LP result.
Dennis