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    Disease Progression Lumbar Puncture

    I’ve been dx for 18yrs. I had a lumbar puncture then that confirmed MS, 2002.

    Has anyone had a repeat LP years after diagnosis to assist in determining answers to your disease progressing? Thank you!

    #2
    Should have given more info...been slowly declining last 2yrs, last 3 months a lot of increased old & new symptoms. Most drastic turn I’ve had in 18yrs of my MS with no relief. MRI of brain, C & T spine show no active lesions but some areas of concern. I’m currently on Ocrevus. Neuro suggested a lumbar puncture. I told him thought that was a “one & done” procedure for dx only. He said no testing of the fluid can show active disease that MRI’s might not be reflecting.

    Comment


      #3
      Originally posted by deex3 View Post
      Should have given more info...been slowly declining last 2yrs, last 3 months a lot of increased old & new symptoms. Most drastic turn I’ve had in 18yrs of my MS with no relief. MRI of brain, C & T spine show no active lesions but some areas of concern. I’m currently on Ocrevus. Neuro suggested a lumbar puncture. I told him thought that was a “one & done” procedure for dx only. He said no testing of the fluid can show active disease that MRI’s might not be reflecting.
      Hi deex3 ~

      I have not heard of a lumbar puncture for monitoring progression of MS. But I have learned that conventional MRI's don't show the progression (neurodegeneration) aspect of MS as clearly as they show the inflammatory lesions.

      You may find this information helpful, by MS Specialists, from a Cleveland Clinic podcast:

      "Bob Fox: I have struggled with the same thing, the same exact thing of the patient saying, “Doc, I'm confused. I know I'm getting worse, but you tell me my MRI is stable.” What I find helpful is explaining to patients the two underlying components of MS, the active inflammation that's manifest by relapses and new lesions in MRI, and then this neurodegeneration, or an accelerated neurodegeneration, which is accelerated by the previous injury of the MS, the relapses and the lesions in MRI.

      Even though we may have been able to turn off the inflammation, perhaps with a therapy the patient is on, an anti-inflammatory therapy, even though we stop the inflammation and they don't have relapses and they don't have more new lesions in MRI, the degeneration is still going on. So I've found it helpful to explain to patients those two different components, and how the conventional MRI only measures the first component, the new lesions on MRI.

      It's the corresponding MRI signature for the relapses that most patients are familiar with, but that gradual, little-by-little decline is not measured by the new lesions. That's why, even though they don't have inflammation, they're still degenerating. By explaining that, I can often get patients to understand those two different facets of their disease."

      https://my.clevelandclinic.org/podca...progressive-ms
      PPMS for 25 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        Hi deex3.

        When you were diagnosed with MS was it Relapsing/Remitting MS (RRMS)? If this is the case the natural progression (for some) is transitioning to Secondary Progressive MS(SPMS). The more years we have MS the more likely this will happen.

        I agree with your "once and done" for the Lumbar Puncture(LP). When I had the LP during the diagnostic process it did show o-bands which indicates active demyelination. Multiple Sclerosis is a demyelinating disease. Personally, I would not put myself through the LP again.

        MS is a progressive disease regardless of the treatments for it.

        It is possible to have a relapse even if you are now Secondary Progressive. Steroids may or may not be helpful but your Neurologist should at least offer them if they are warranted. There are also symptom management medications which might be helpful. If needed, working with a Physical Therapist(PT) and/or exercise can also be helpful and is many times recommended.

        The LP isn't going to be helpful at this point, in my personal opinion. I believe a Neurologist needs to treat the patient...not the MRI.
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

        Comment


          #5
          Originally posted by deex3 View Post
          I’ve been dx for 18yrs. I had a lumbar puncture then that confirmed MS, 2002.
          Lumbar puncture sounds so passive and easy. I prefer the other term that was commonly used, "spinal tap."

          I had 2 of them done in the late 80s when I was diagnosed. The first was horrible (the neurologist told me it should've been less painful because she used the "small" needle) and the second was worse. Suffice it to say I would not be eager to have another. In fact that's one thing that scares me away from the baclofen pump.
          59M / RRMS / Dx1987 / Ocrevus

          Comment


            #6
            A lot of what others posted makes sense to me.

            My experience, as someone with MS for 18 years now, is that, 4-5 years ago, my MS flares discontinued but I seemed to be experiencing more progression than I'd usually experienced before. My MS Specialist told me that I was likely transitioning into SPMS (Secondary Progressive MS). Although there were no new MS flares and no new MS lesions, the progression was occuring because of additional damage in the old existing lesions.

            In 2018, I began using a cane when I left the house. At the time, my husband and I expected that if I continued to progress at that current rate, I might be in a W/C full time within a year.

            Later that year, I found a functional medicine doctor and began a diet similar to Wahl's diet (no gluten, no dairy, no sugar, etc) and made lifestyle changes (no microwave, got rid of plastic food storage containers and non-stick cookware in the kitchen; use non-toxic personal care products and household cleaners; exercise regularly, etc). Since making these changes, my MS has been stable.

            I have also not heard of lumbar puncture being used after dx. If it shows active disease process that MRI's do not show, perhaps it would show the active disease progression that happens during SPMS? I don't know. I've already decided that's what is happening to me without going through the horrible process of a lumbar puncture.
            Last edited by Mamabug; 08-30-2020, 06:02 PM. Reason: Fixed spelling
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment


              #7
              Hi deex3.


              I know there were some studies trying to look at biomarkers in the CNS and trying to tie it to different aspects of MS, which included diagnostic, active disease, and progression. They were also trying to use the biomarkers to help determine what treatment would be most effective. But I am not sure it is anything other than experimental.

              If it was me, I would let him know the thought of an LP is making me anxious and ask my neuro what the LP will show, how it helps answer the question, and if there are any studies he could point you to so you could way the risk/benefit. Also, verify that it is not considered experimental, because if it is, many insurance companies won't cover it.

              Here is one that may be of interest:
              https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5433316/

              Let us know what you decide and how things go. Regardless, hope you feel better soon.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                Originally posted by deex3 View Post
                I’ve been dx for 18yrs. I had a lumbar puncture then that confirmed MS, 2002.

                Has anyone had a repeat LP years after diagnosis to assist in determining answers to your disease progressing? Thank you!
                Originally posted by deex3
                Should have given more info...been slowly declining last 2yrs, last 3 months a lot of increased old & new symptoms. Most drastic turn I’ve had in 18yrs of my MS with no relief. MRI of brain, C & T spine show no active lesions but some areas of concern. I’m currently on Ocrevus. Neuro suggested a lumbar puncture. I told him thought that was a “one & done” procedure for dx only. He said no testing of the fluid can show active disease that MRI’s might not be reflecting.
                Hi deex3,

                I echo what others have said.

                This procedure is also used in the diagnosis of Progressive multifocal leukoencephalopathy (PML). A diagnosis is not definitive based on this test alone, but combined with MRI, clinical history, and in some cases, a brain biopsy.
                https://my.clevelandclinic.org/depar...sis-management

                Maybe that's something your neuro wants to rule out? (Although would think would've told you if this is why. ) Do you know if you are JCV+?

                The first case of PML from Ocrevus treatment alone was reported in April.https://www.medscape.com/viewarticle/929728

                Please keep us updated and best wishes
                Kimba

                “When you change the way you look at things, the things you look at change.” ― Max Planck

                Comment


                  #9
                  Thank you all! Yes originally dx with RRMS 18yrs ago, been moving into secondary progressive last couple of years. Dr is trying a couple new symptom management meds.

                  Actually I found several studies/articles regarding “Neurofilament light (NfL) levels“ that can only be tested from spinal fluid. There’s a blood test possibly on the horizon to check these levels so a LP doesn’t have to be done. Very interesting! Attached an article that came out 3 days ago.

                  https://www.msard-journal.com/articl...552-6/fulltext

                  Thank you Kimba22 the PML thought, interesting. My MRI isn’t showing signs but because of my sudden progression he might be double checking with this test. Ha glad he didn’t tell me if that is a slight suspicion of his, rather wait for test results. I was on Tysabri for 6yrs with a negative JCV until I had pneumonia and then it shot way up so I had to immediately stop Ty. Been on Ocrevus for 2yrs now.

                  I’ve decided to do the test. Right now I want to be aggressive in seeing if there’s a reason things are changing so fast. Could just be my MS journey taking a turn and I carry on!

                  Keep you posted as to the outcome! 😊

                  Comment


                    #10
                    Originally posted by deex3 View Post

                    I’ve decided to do the test. Right now I want to be aggressive in seeing if there’s a reason things are changing so fast. Could just be my MS journey taking a turn and I carry on!

                    Keep you posted as to the outcome! 😊
                    I'll be interested to see what the outcome is. Thanks for being willing to share that with us. The concept of a lumbar puncture after 18 years is a new idea for me.
                    ~ Faith
                    MSWorld Volunteer -- Moderator since JUN2012
                    (now a Mimibug)

                    Symptoms began in JAN02
                    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                    .

                    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                    Comment


                      #11
                      Hi deex3,

                      "These findings position neurofilaments as a versatile biomarker suggesting clinical utility in detecting MS disease activity, treatment response, adverse effects and prognosis."

                      "However, all these associations have been found at group level and little scientific guidance is available on how to interpret NfL values for individual subjects."

                      Interesting journal article, thanks for sharing! (Just too bad it's not open access, so wouldn't have to pay to read the whole thing. )

                      Originally posted by deex3
                      My MRI isn’t showing signs but because of my sudden progression he might be double checking with this test. Ha glad he didn’t tell me if that is a slight suspicion of his, rather wait for test results. I was on Tysabri for 6yrs with a negative JCV until I had pneumonia and then it shot way up so I had to immediately stop Ty. Been on Ocrevus for 2yrs now.
                      Yes, sounds to me at least, your neuro didn't want to alarm you. But, better safe than sorry.

                      Good luck with the test, and please keep us updated!
                      Kimba

                      “When you change the way you look at things, the things you look at change.” ― Max Planck

                      Comment


                        #12
                        Just had the blood draw for Quest´s kappa light chain serum test. When the research papers say neurofilament aka NfL, they are referring to kappa light chain and lamda light chain filaments. Neuro was willing to write scrip for this and I am curious to see if after being on Ocrevus since 2017 what my level is. Serum levels do have a high correlation with CSF levels.

                        Comment

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