Wednesday, August 12, 2009 KJ asks

Q: Lumbar Puncture Question

As part of my neurologist's efforts to diagnose my problems, she wants to do a lumbar puncture. I'm all for it, but I'm not having many symptoms right now. Question - Does it matter when I have this procedure done? Would it make more sense to have it done when I'm having more symptoms? My tremors are acting up a little, but the other symptoms aren't too bad. These kind of run in cycles so it's just a matter of time before I start having more twitches, visual disturbances, and cognitive problems.

Thanks,

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Answers (5)

Vicki, Health Guide

8/14/09 4:07am

Hi KJ,

Let me chime in here, too. There are already some good personal experience responses, but I will add mine to the group.

As far as I know, and remember I am not a doctor, spinal fluid does not require a specific symptom to be active to detect proteins or oligoclonal bands that may indicate MS. Your neurologist probably knows, and she is recommending it. That has to mean something.

In 1989 when I had a spinal tap, few of my symptoms were currently active. Let me recommend a little reading:

- Article giving general information on the lumbar puncture

- National MS Society talks about fluid analysis as part of diagnosis -- scroll down

I hope this helps with your decision. Good luck.

msbpodcast

8/14/09 2:46pm

Then he should go ahead and do it.

But I kind of wonder about using invasive tests to confirm what you already know. (Remember, at this point the diagnosis has already been made.)

I would rather get an MRI to monitor the degree of change and I don't think a LP will help you narrow down where you're getting a lesion.

Knowing where you are getting a lesion will tell an ergotherapist what the problem with sensation or motion control might be.

People who recommend strength training to me, a guy who did mulltiple reps of leg-pressing over 400lbs a few years ago, obviously don't know what my problem is. :-)

I have lesions in my brain that interfere with signals between my volition and my actions.

The problem with MS is that you can't apply algorithmic thinking to a derivative disease. It just doesn't work.

If my feet feel cold, if is it just my nerves misreading something that isn't there, or am I really standing ankle-deep in a frozen pond, in August, in Jersey city, under a blazing sun?

I don't trust anything or anyone without verification, least of all my own body.

8/14/09 9:10pm

Thanks for the advice and comments. I do appreciate them all.

Lisa made the point above that I have not been diagnosed. Exactly right! My MRI and CT scan with dye were apparently not conclusive. The lesions were small and not in the typical places. The neurologist was not willing to consider my vision problems of three years ago ("probable" optic neuritis) as a clear example of clinically isolated syndrome either, since until recently I also had a growth in my eye.

All of this has left me in a particularly frustrating state of limbo. I am supposed to deploy back to Iraq in a couple of months and I don't want to go if I can't perform up to speed or if I'm going to be a medical burden on the unit. I can't "opt out" of the deployment very well without a really good reason - like a diagnosis. I feel I need to go for personal, financial and career reasons, so I'm obviously pulled in a lot of different directions right now.

The doctors have "proven" that I have intention tremor that responds slightly to medication. I have "white matter disease". They have also shown that I have a measurable cognitive deficit and moderate double vision. I have some very mild gait and balance irregularities. I had bladder control and ED issues in the past. Other problems - facial pain, twitches, seeing shadows and flashes, etc. are vague and infrequent. All of this together is not enough for a diagnosis. Now that the growth in my eye has been removed (benign watery cyst) and my vision problems have not improved, the neurologist, general practitioner, and opthalmologist all want me to go forward with additional neurological tests.

I don't think I'm a hypochondriac and I really don't like hospitals. The idea of getting a needle jabbed into my spine is not my idea of a good time either, and I can't afford to take unnecessary time away from work. In short, I don't want any kind of illness or injury, but I want to make a really thorough effort to solve this junk before I head back to the sandbox/catbox of the Middle East.

Thank You,

KYBlu

8/13/09 12:48pm

I am no expert on MS, since I have only been diagnosed for a month or so, but I think you should go ahead and have the LP. I may be wrong, but I THINK the oligoclonal bands they are looking for will still be present in your spinal fluid whether you are having an "attack" right now or not. Especially if your neuro wants it, I say go for it and get it over with. The sooner you can get a diagnosis, the sooner they can start treatment. Best of Luck.

8/13/09 8:47pm

Thanks. I think I'll give it a try. I know it can be painful and it may not prove anything conclusively, but it is worth a try in getting closer to somekind of diagnosis.

msbpodcast

8/13/09 8:10pm

I had a lumbar puncture done back in 1985 and I'm sorry that the doctors haven't tried something less invasive.

If you're NOT having symptoms, I'd say DON'T DO IT.

All they're going to find is NOTHING in you spinal fluid.

8/13/09 8:49pm

At this point, even if they don't find anything, I feel like I need to have more tests done. I'm not that bad right now, but I'm sure not great! At this point even a test that doesn't prove much of anything still feels like I'm being proactive and getting something done.

msbpodcast

8/13/09 9:35pm

Get an MRI.

Get an evoked potential test.

Get a physiological evaluation.

Get something non-invasive.

A lumbar puncture when you're NOT having an attack is wasteful and potentialy dangerous.

I am being parsimonious for you, but its money time and other resources that you're wasting that other people could be using instead, like to confirm their own diagnosis.

If you know you've got MS then there is no point to ever having an LP.

Lisa Emrich, Health Guide

8/14/09 12:47pm

Charles,

Thanks for participating in the Q&A. We need all the help and voices of experience as possible.

You've made the expect point of why KJ should have the LP. He is NOT diagnosed with MS yet. His neurologist is collecting evidence to make that determination, if indeed it becomes his final diagnosis.

KJ,

When I had my LP, it provided enough evidence to show that I indeed had a demyelinating disease of some sort (possibly MS or transverse myelitis). At that time, the MRI showed only 1 lesion large enough to measure and count. But the next MRI three months later showed 3 measurable lesions and I finally got the diagnosis.

I wish you good luck with the procedure and we will all await the results.

Lisa

8/14/09 9:15pm

Thanks Lisa,

I appreciate you pointing out that I am not yet diagnosed. I think some of my earlier posts made it look like I know for sure that I have this. That's really not true. My neurologist has made it clear that she's on a mission to "disprove" MS as a possible diagnosis. I'm all for that, but I'm a natural born pessimist and tend to consider the worst.

Tammi

8/13/09 9:09pm

I was diagnosed back in March and had two MRI's done. Brain and spinal which both showed lesions and yes I was having symptoms at the time. Meanwhile after the 2nd MRI showed the lesion on my spine my neurologist called to tell me that "yes, I have MS". She then proceeded to tell me that she wanted me to also go for the lumbar puncture. She said it would give her a better dx. I told her "no" - they had enough tests to show I have MS. She did agree with me. My question to you is did you have MRI's done yet? Good luck to you!!

8/13/09 9:34pm

Hi,

Thanks for the information. I had an MRI several months ago to check for reasons for a tremor that I have. The MRI revealed multiple small white matter lesions. After that I had a CT scan with enhancing dye that showed at least one "active lesion". The neurologist says that the number, size, and locations of the spots aren't good enough for a clear diagnosis. In the meantime I have several odd symptoms, fairly typical of MS, including vision problems, leg and face twitches, facial pain, bladder problems, and others. My opthalmologist and general practitioner want me to pursue a neurological cause for my problems.

Thanks again,

Tammi

8/14/09 11:50am

then I would probably go for the procedure myself if i were you!! Again, good luck to you!!

KYBlu

8/14/09 2:55pm

I had the LP and it was not pleasant. BUT, i am glad I did it and glad my neuro recomended it. With the results, he was able to make a definite diagnosis and therefore start me on therapy without having to wait months for additional MRI findings. FYI, I work a lot with insurance companies and they have certain criteria for certain diagnosis in order to pay for treatment. (medical necessity) Betaseron injections are quite pricey. Don't know if this is an issue for you, but keep it in mind and best of luck.

8/14/09 9:20pm

Thanks. I can't believe it will be worse than the eye surgery I had two weeks ago, but I'm still not looking forward to it. Right now it is tentatively scheduled for September 16th but we're looking for an earlier opportunity to get it done.

All the best,

8/15/09 1:53pm

Thanks also for the information on the insurance coverage. Right now I have both private insurance, and Veterans Administration coverage for anything believed to be service connected. All of my neurological testing has been at no cost through the VA since MS and most other neurological and autoimmune illnesses are presumed to be service connected by the VA. I'm not really thinking about medications or treatment yet, my focus is really on a diagnosis (ANY diagnosis or explanation for my problems).

Thanks again,

Q: Lumbar Puncture Question

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