Is the LP worth it for diagnostic purposes?

[derrie]

My question is whether anyone has found that having a lumbar puncture was useful for getting to a diagnosis (not just for MS, but for the diagnosis of anything).

I have had two flare-ups of symptoms -- once 8 months ago, and now this episode, which started a month and a half ago -- of paresthesia in my arms and legs, increasingly excruciating pain, and more recently, fatigue.

I have had a full battery of tests, all normal. Normal B12, normal B6; normal ANA, sed rate, c reactive protein; normal celiac antibodies; normal RA screen; clear brain and c-spine MRIs; normal NCS/EMG. I had a low-normal ferritin level, which made my neuro think Restless Leg Syndrome (which my symptoms don't quite fit), so he put me on iron and Requip. No response from my symptoms; they soldier on.

So now he wants me to get an LP. While I would like to get to the bottom of my problems, especially since they are worsening and unresponsive to treatment, I am leery of another expensive and potentially painful diagnostic test, especially when no others have proven at all helpful (except to tell me what I do not have; which, I suppose, is helpful).

So, I'm just curious-- has the LP proven diagnostically useful to anyone? Do you have a story about how LP findings helped turn a corner in figuring out what is wrong with you?

[rsb]

This isn't the exact answer you were looking for, but I have decided I will NOT pursue the LP. For my purposes, getting a definitive diagnosis won't change treatment plans. I already have systemic lupus, and am on prednisone, plaquenil, methotrexate and, in a few months, will also go on rituxan. MTX and rituxan have apparently shown promising results with some MS patients, so I wouldn't change anything if I do have an overlay MS diagnosis.

Also, there is a significant false negative rate, which does influence my decision. The final straw for me was that I don't have anyone who could watch my kids for several days if I end up with a spinal headache and need a blood patch. I have really bad luck with anything happening in that area of
k my spine- I have an extra lumbar vertebra, and epidurals have been a nightmare for me

When I line all those pros and cons up, there really isn't a compelling pro for ME, y'know? I really think my decision would be quite different if I were in your shoes, since you've had so many other possible diseases ruled out.

[deescee]

Have had two LPs

During the beginning of the search for a dx, my neurologist did 2 LPs. The first was okay. But the second was a nightmare. I did the 24 hours of laying around. After a week of vicious headaches if I got vertical, my husband had to yell and demand something be done - a blood patch. If you have young kids who need your attention, I understand your concern. And my second LP only showed slight markers for MS or whatever it was supposed to show. Hopefully you'll get some more responses to help you with your decision.

[Redwings]

Hi derrie:

My LP was perfectly normal. In people with MS, the LP is normal 15-20% of the time. So a negative LP isn't helpful. The bad news, of course, is that you have to have an LP in order to find out that it's negative.

A positive LP isn't diagnostic of MS. Several conditions can cause an LP to be positive for O-bands and other components. It might be argued that, if a person doesn't have any of the other conditions, then it has to be MS by process of elimination. And that may not be a bad argument, except that the McDonald diagnostic criteria require the presence of at least one lesion in the central nervous system that's typical of MS.

Otherwise, there has to be a collection of other suggestive information that, in total, leads to the diagnosis. If all of your other test results are also negative, it becomes much harder to come to a conclusion of MS. It doesn't mean that you don't have MS, but without more than a positive LP, there isn't enough information to make a diagnosis from.

You said you had a full battery of tests, so you may have had these and not mentioned them, but you didn't mention a VEP and screenings for Lyme disease, Sjogren's syndrome, systemic lupus erythematosis and sarcoidosis. Lyme disease can cause a positive LP. Since Lyme disease and MS can look exactly the same, if all other tests are normal, a positive LP may not be any more or less indicative of MS than it is of Lyme disease (or Sjogren's, lupus or sarcoid, for that matter).

A positive LP will be evidence that something is wrong -- which can be helpful -- but it can't tell what that is, and can't lead to a diagnosis of MS unless there's something else that also points to it. It might be argued that two episodes of paresthesia, pain and fatigue constitute significant evidence of "MS-like" neuropathy. But the counterargument is that paresthesia, pain and fatigue are generic symptoms that can apply to many other conditions as well, and aren't specific enough to MS to lead to a diagnosis of MS. What your own neurologist might infer from those episodes could go either way.

[hope32]

Sort of. I had my first onset of symptoms (ataxia) start the day I moved to Taiwan for a new job. I ended up in a Taiwanese hospital for 10 days and the neuro ran a ton of tests--MRI, EEG, EKG, CT scan, tons of blood work, LP, cerebral angiogram, EMG and I don't even know what else. Everything came back normal except the MRI (two lesions) and the LP.

Based on all that, he said he thought I had MS but that he had no experience treating it because it's very rare among Asians, so he told me to go see an MS specialist in the US. A friend got me in with Dr. Schapiro in MN. He said the LP did look abnormal but it was done differently in Taiwan so he wasn't comfortable using it as the third diagnostic criterion. Based on my symptoms and MRI he said I had "probable MS" and it would have been definite at that point if he'd included the LP. He told me if I ever had another MS attack and lesions I would have a "definite" diagnosis ... and 6 years later, I did. In the meantime, he didn't recommend any DMD (though my current MS specialist said he would've put me on one then). I'm kind of glad I was able to go 6 more years without the darn shots though.

Good luck to you in your decision; I hope you make one you feel comfortable with and figure out what's going on soon!

[jumpinjiminy]

It's worth it if it shows something. I would ask if it would make a difference in your potential for a dx if it came back positive vs. negative. I have a feeling that even if mine had come back positive, the ordering doc still wouldn't have dx anything.

I didn't have any problems after the tap. But I do wish I would have taken a xanax first. Being my first time and not knowing what to expect, after he got through the first membrane I thought that was it, and then he punctured through another one. No CSF came out so he started poking around for the right space. It didn't hurt, but sent some tingles down my legs. I would have done much better with a xanax.

If you decide it will make a difference for you, hydrate, hydrate, hydrate. Get nice and plump with water starting at least two days in advance of the procedure.

[Mamabug]

IMO, anything that helps you get a quicker dx is worth it. The longer you remain in limbo, the longer you will remain untreated for MS, if that is what you have, and the faster your disease can progress.

My LP was not difficult or painful. I lay still, as directed. And, because I was in a major flare, I was so tired that lying still was no problem because I was mostly sleeping anyways.

~ Faith

[ShakespeareMama]

Personally, I've had one LP, already. Not to scare you but it went fine until I had some crazy reaction to it, leaving me bedridden for a week.

BUT, that said, I would do it all over again if it did get me a dx. Unfortunately, the first one I got didn't show anything so I'm still in limbo land.

Good luck with whatever you choose!

[empirerecs]

I had one, it gave a was positive and gave me an answer and I started on meds. I had all those other tests, didn't have any of those other things but had lesions and other sx's of MS. My LP results were ver significant so I'm glad I did it.

I took Ativan prior, was pretty loopy, had hilarious anesthesiologist and nurses, it wasn't painful, just weird (I HATE NEEDLES - GIVING BLOOD, IVs). I did have to go back for a blood patch, got the headache, but we kind of expected that might happen with me. It's pretty rare though.

I wish you luck with your decision, and if you haven't had all those other tests, maybe you should, just in case.

[derrie]

Thanks, all, for sharing your input and experiences. Redwings, special thanks for explaining how my neurologist might be using the LP results and also for some ideas of other things to ask about (Lyme, Sjogren, sarcoidosis-- no idea if he's thought of those; he has ruled out SLE).

At this point, I honestly don't think I have MS, like my neurologist originally announced I probably did. He maintains, though, that there is definitely something wrong with my CNS. I'm just getting tired of this diagnostic process-- office visits every other week, lab tests, being shoved through noisy tubes, and repeatedly shocked with electricity. I'm so over it. And even with insurance, this is getting to be a spendy hobby.

So, at this point, I am carefully weighing the pros and cons of any further testing. I may just need to accept these symptoms. That said, I also want to be effectively treated and back to normal in time for ski season!

(PS - This turned out to be a very informative thread; I think it will help people with similar questions in the future; go team)

[SNOOPY]

So, I'm just curious-- has the LP proven diagnostically useful to anyone?

It was for me.

Before explaining it's important to know I was diagnosed a long time ago. I was diagnosed under the Poser Criteria.

I was diagnosed within 3 months which included seeing my PCP, a referral to a Neurologist, testing and then diagnosis. During this time I was in a severe exacerbation all testing was negative. My last test was a Myelogram directly followed by a LP.

The Myelogram was negative, the LP was positive (4 o-bands). I received a clinical diagnosis based on the positive LP, neuro exam and symptoms.

[SNOOPY]

My last test was a Myelogram directly followed by a LP.

Oops! I turned those two tests around. The LP was first then directly after the LP I had a Myelogram. Good grief

[Mamabug]

...
So, I'm just curious-- has the LP proven diagnostically useful to anyone? Do you have a story about how LP findings helped turn a corner in figuring out what is wrong with you?

Yes. In combination with multiple MRI's (over time), and more than one flare ("disseminating events", I think they were called).

~ Faith

[gomer]

I was Dx before my LP.

Tons of Dawson's fingers, evp loads of blood work etc, along with decades of documented history, even sent to the shrinks who decided I was not nuts or even depressed, just "adamant" something else was wrong.

Mine was done in the VA hospital. I agreed (reluctantly) as long as they did it under fluoroscope. They ended up having to put me totally under to do it. I had NO after problems at all. My oldest son did drive me that day.

Would I do it again, YES...as long as they put me totally under! My LP results simply gave even more evidence to back up the RRMS already given.

Gomer