This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello wonderful people! I need your knowledge on the subject of a lumbar puncture. I think I'm nearing the point of needing one and I'm wondering all about what one can help the doc learn about me.

I've heard all about what to physically expect after one and needing to lay down and all that stuff, but I want to know the medical purpose of it. I know they're removing some spinal fluid for testing but what are they testing? What exactly are they looking for? And does a spinal tap tell a doc whether or not you have MS or what stage you're in?

I'm so confused. Any info would be greatly appreciated. I have an appointment next Wednesday in which I am going to bring this up but as usual, I like to have a little knowledge of the subject before I walk into his office.

Thank you!

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October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)

hi LA, here's a link to some post-LP CSF testing info:
http://www.labtestsonline.net/understan ... sis-3.html

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I would have to check my lab work from my spinal tap to be certain, but the CSF is usually checked for oligoclonal bands which show the presence or absence of immunoglobulin (antibodies) and it's also checked for the presence of white blood cells which are an indicator of inflammation.

Here's a basic overview.
http://www.mult-sclerosis.org/spinaltap.html

NHE

LA,

The lumbar puncture, from what I understand, can check for several things, among them the presence of myelin basic protein (MBP), and, as NHE mentioned, immunoglobulin shown by oligoclonal bands. I never had the LP myself. I was told it can confirm a diagnosis of MS, but a negative result does not necessarily rule out MS. And the neurologist told me that about 15% of people with MS can have a negative LP result.

The people doing the LP are the experts, but one thing you may want to watch for is if they draw blood at the same time. From what I understand, the test for oligoclonal bands checks to see if there are bands in the cerebro-spinal fluid that aren't in the serum. I have read accounts where people went for an LP, but no blood was drawn at the same time, so it's hard to say what they tested for.

I would not get one. I was dx 5 years ago with the results from an MRI. I do not know why doctors still what to have lumbar punctures performed anymore? If they can't dx with an MRI I would not agree to a lumbar puncture. Just my thoughts, lumbar punctures seem so yesterday.

Thank you all for the information and links.



Unfortunately, during my recent trip to the ER I had two doctors (neuro's) tell me that I do not have MS. WTF! "Then why am I injecting myself daily with Copaxone if I don't have MS?" I asked. No answer. SMH

Here's the condensed version of my story -

Diagnosed with RRMS Oct 2009. Saw NP at my Neuro's office on May 27, 2010 and they wanted another brain MRI due to new symptoms. My neuro's office dropped the ball and never sent my referral to my insurance company. Pissed off and worried about my new symptoms, I went to the ER and got the MRI.

The docs there were a part of a neurology team but none (that I know of) were MS specialists. My MRI, according to them, is the same as my previous one a year earlier. They asked me, "why do you think you have MS?" and I told them because a MS Specialist diagnosed me with RRMS and I've been on Copaxone since November 2009! Why would I not think I have MS?! Idiots! I'm fuming because of all the mis-information I'm getting. I'm considering requesting a spinal tap because I do not want to wonder about what I have. I want answers and this seems like the best way to get them.

My brain MRI from a year ago showed 3 lesions, my spinal showed 1 and my symptoms matched with those typical of MS. My neuro who diagnosed me (MS Specialist) did say that I am in the earlier stages of it so I'm not sure what to think. Maybe I don't fit the criteria completely but I'm on my way? Beats me.

So....like I said, I'm thinking a spinal tap is the best way to get some answers. I've had a VEP - Fine! EEG - Fine! And EMG - Carpal tunnel but fine!

_________________
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)

LA, why not have a look into that whole hemachromatosis idea, if you have not already? have you got a good sense of the range of differential diagnoses for ms?

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I'm not completely familiar with hemochromatosis but is that the disease where you have too much iron in the body? I've had numerous blood tests that include iron levels being tested and I'm good there as well. The only thing showing up on blood tests is low B12.

I do not have a good sense of the range of differential diagnosis for MS. I just thought there was RRMS, PPMS, SPMS. And I figured that RRMS was the least severe on the scale.

_________________
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)

heya, well b12 deficiency is one of the differential diagnoses that if your levels are deficient, that alone should rule out ms diagnosis. and there are a few other conditions that can seem like ms but not be ms. have you been getting b12 shots and it's still low? what exactly is 'low' for you? did they also do folate and MMA and PCA tests on you?

you need enough b6 in your system to properly absorb b12... and you need vitamin e to convert it to a biologically active form, if you are not already taking a biologically active form, that is. if you use antacids at all that can hinder absorption also....

hope that helps a little...???

JL

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Hi LA!

Why were you in the ER? Might help if we knew...

I met a MS'er today who never did a LP - never saw reason why! Maybe his MRI was more conclusive? I'll find out why...

It might help to start thinking about what else you could possibly have and how to test for it - what are your symptoms specifically?

Maybe use the Dr. House method of writing them all down on the board and crossing off possibilities as they become eliminated?

I had the LP and the next week stunk! It did confirm MS which is what the docs were looking for... I never thought to question getting it done, but your ER experience really throws a loop over it all!

I hate getting needled unneedingly!

Best,

A/C



PS Boogerz is getting fat, snores alot, eats lots of socks and flatulates alot! I'll have to update the avatar sometime...

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If you can't explain it simply, you don't understand it well enough. - Al Einstein

LoveActually -
I've never had a lumbar puncture (dx '98). I figure that if I cut myself, I bleed; if I hurt my back, I do not leak spinal fluid. I believe that it is a closed system for a reason. My physical therapist says she has worked with people for whom l.p. did not work out well.
Believe in yourself. You know what is true. Good luck.

Did you have an MRI done around the time of your diagnosis in October? Were the ER neuros were saying your latest MRI does not show any changes, or it does not show any lesions at all?



Differential diagnosis refers to all the other conditions that might cause symptoms similar to MS. MS can be a tough disease to diagnose, since their isn't one test to say, "yeah it's MS." There's no simple blood test or biopsy. The MRI has become the standard tool for helping determine if it's MS, but the white spots seen on MRI films can mean many things.

So, the doctor has to make a diagnosis based on clues from a bunch of sources, like symptoms, neuro exam, MRI, and sometimes LP. Along with this they should do tests to rule out other things. For example, doing a syphilis blood test is pretty standard procedure, since a neuro-syphilis infection can act a lot like MS. The EMG and nerve conduction tests also try to rule out other causes (they look to see if there is muscle and/or peripheral nerve damage).

Unfortunately, the procedure isn't that standardized - one neuro might see spots on a MRI and immediately say it's MS. Others might be more circumspect, and want to wait for a second attack, for example.

The lumbar puncture can help rule in MS, but it can't rule it out. A negative result doesn't necessarily mean no MS. But if you want it for peace of mind, then it might be worth doing. If you do decide to go through with the LP, people here can give you plenty of advice on how to avoid some of the problems with the LP, like the spinal headache.

I think the best thing is try to find a neuro you trust and can work with. As you're finding out, it's tough trying to rule these things out on your own.

Hi, I'm new to the MS journey but do have some thoughts on the lumbar puncture. I thought if I had one it would give me a definite answer as to whether or not I have MS. My MS specialist did one and it was no big deal, but the results came back negative. I was shocked, but my doc said it's not uncommon for the lp to come back negative, but you still have MS. It might give you the answers you're looking for, but it isn't a definitive test. Jade

Love,
As you know, the diagnosis process is different for everyone. It took me two years and a whole lot of tests that eliminated other conditions before my MS diagnois. The spinal tap for me was the last test. In a period of two years, I had 5 brain MRI's, two cervical spine MRI's, one lumbar spine MRI, one VEP, and one nerve conduction study. B12 and Vitamin D levels were measured. Lyme Disease, lupus, Sjogren's syndrome, ulcerative colitis, Chrohn's disease, vasculitis, and hepatitis C were all ruled out. My MRI's showed two lesions developing during the two year period and I was deficient in B12 and Vitamin D. Everything else normal. I thought it was just the vitamins. After B12 shots and D supplements, my symptoms persisted so I agreed to the spinal tap.

My tap results, which were positive for o-bands and a high IGG index, combined with MRI results showing two lesions that developed at separate times, and my clinical symptoms resulted in the MS diagnosis. Without the tap, I would have had a much more difficult time accepting the diagnosis. Do I still doubt my diagnosis? Some days, but I take my Copax as I continue to educate myself about all the reasearch.

I send you strength and calm as you go through this very difficult time.

_________________
Wife, Engineer, Traveler
Dx RRMS January 20, 2010
Started Copaxone May 6, 2010

I guess I am still a little confused why the diagnosis process is different for everyone. I thought if they think you have MS you are sent for a MRI and if they find lesions you have MS. I just thought it was a done deal you have lesions you have MS. I know years ago before MRI it could take years to dx people with MS. I guess there may be some question if you have a very low number of lesions, say three or less. But, I also know the number of lesions can change over time.