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Would Someone Please Educate Me on LPs?

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    #1

    Would Someone Please Educate Me on LPs?

    Hello Everyone,

    I have been reading through a lot of threads and I saw where some people are still getting Lumbar Punctures.

    Back in the old days, when helmets were not required to ride bicycles, and gasoline was 20 cents a gallon, it was pretty much required to have an LP. And the diagnosis of MS was a pretty lengthy process. 20% of us had brain lesions but negative LPs. I was told at that time eventually all MSers would have positive LP, depending on the progression of the disease.

    I was told by my last MS Specialist that most of the MS Specialists were not doing LPs because of the advancement of digital MRIs and the clarity of the lesions on the brain and or spine. MS lesions apparently have a pretty specific appearance. VEPs were still being done as well as EMG.

    I thought Wow! That is so great. Is this not true? Are LPs still being done? I was hoping that we have progressed enough not to have to do an LP.

    Does someone have the knowledge of what is standard practice today. I am just curious and like to keep informed.

    Thanks-Katie
    Katie
    "Yep, I have MS, and it does have Me!"
    "My MS is a Journey for One."
    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri
    Tags: None
    #2
    The spinal tap is still a part of the McDonald criteria 2010 for diagnosing MS. You can look it up. It is also used to rule out many other diseases that look like MS but are not when you have a questionable MRI. Meaning the the correct shape of the lesions are there, but they are not in the correct places and so forth.

    Analysis of the CSF just reveals if there are O-bands in the CSF and not the blood for MS. If they are in both, it could be MS or another disease. If there are none, it could be MS or another disease.

    They can rule out Lyme to a greater degree with CSF than with blood. They can rule out lymphoma as the cause for inflammation. There is a whole list of things they test for.
    That is why they still use it.

    Most of us are diagnosed by an MRI alone, as it is glaring. Some people are not quite there. They may only have 1 lesion, and need more evidence, hence an LP, then wait for another lesion to show on MRI, or diagnose with CIS if appropriate and all other diseases come up negative.

    It is an invasive procedure in your spinal cord, they are aware of this and do not do this procedure wily nilly.

    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment

      #3
      I was DX'd more than 10 years ago now, so I'm sure things have changed, but I was given a LP after my MRI's as a means of confirmation.

      Since my MRI's were clear I think the LP was probably overkill, but hindsight being 20/20 and whatever.
      Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

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        #4
        Thankyou so much for that great explanation 22cyclist! That clears things up for me.

        Aitch10-I too was diagnosed quite awhile back and had to have an LP because it was required even though the MRIs were clear. My ex-husband was in the neuros office with me at the time and he passed out on top of me while the needle was still in my spine! Won't tell you details about what happened next...but lets just say there was one very angry ER doc and when my ex passed out for a second time...they just left him on the floor.
        Katie
        "Yep, I have MS, and it does have Me!"
        "My MS is a Journey for One."
        Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

        Comment

          #5
          Originally posted by KatieAgain View Post
          Thankyou so much for that great explanation 22cyclist! That clears things up for me.

          Aitch10-I too was diagnosed quite awhile back and had to have an LP because it was required even though the MRIs were clear. My ex-husband was in the neuros office with me at the time and he passed out on top of me while the needle was still in my spine! Won't tell you details about what happened next...but lets just say there was one very angry ER doc and when my ex passed out for a second time...they just left him on the floor.
          I'm jealous. My husband took the day off work to be with me because I was so freaked and they kicked him out of the room - probablybecause of partners passing out
          Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

          Comment

            #6
            Dx´d in ´11 and had it all- MRIs, LP, and evoked potentials. Maybe ´cause I had insurance?

            Comment

              #7
              I was dx in 2011. After an MRI showed a few lesions typical of MS, the neuro in the ER wanted to do a LP to confirm. There were bands in the spinal fluid, though not excessive, but they confirmed the dx.

              Comment

                #8
                I just wanted to clear up one of my posts. From my MRIs it was clear that I indeed had MS....not that I had clear MRIs. They still insisted on the LP...which was negative at the time. Don't think that would be the case today, but we are not ever going to find out...last experience was enough.
                Katie
                "Yep, I have MS, and it does have Me!"
                "My MS is a Journey for One."
                Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                Comment

                  #9
                  Originally posted by KatieAgain View Post
                  I just wanted to clear up one of my posts. From my MRIs it was clear that I indeed had MS....not that I had clear MRIs. They still insisted on the LP...which was negative at the time. Don't think that would be the case today, but we are not ever going to find out...last experience was enough.
                  I had poss MS years ago ...but LP didnt have bands. No DMDs around. Went undx.

                  A few years ... MRI pretty conclusive, but I wanted to be sure. Also for cyclist22's awesome list of reasons.

                  I was offered the choice whether to do LP or not. Did one.

                  Will never do one again as I needed blood patch (again sigh). But I was glad I had done one.

                  Comment

                    #10
                    Willow 63: I hear you! I did several LPs in a study one time, and needed blood patches for 2 of them. Never volunteering for THAT again in my life!

                    Lisa
                    Moderation Team
                    Disabled RN with MS for 14 years
                    SPMS EDSS 7.5 Wheelchair (but a racing one)
                    Tysabri

                    Comment

                      #11
                      I was dx 5 yrs ago with a confirmed dx by one of the top MS specialists in the country based on blood work, hx & MRI. I was offered an LP if I wanted but since both docs were more than 90% sure the dx was correct I saw no reason to have one. It actually explained odd things that had been going on with my body for 11-12 yrs. (I had many more sx than doc knew about at the time of dx.)
                      DX 10/2008
                      Beta Babe 12/2008-07/2013
                      Tecfidera 07/2013-01/2018
                      Aubagio 01/18-09/20
                      Ocrevus 09/20-present

                      Comment

                        #12
                        I will third that. I would never in my life have another LP. It is good to see a lot of people are being given the choice!
                        Katie
                        "Yep, I have MS, and it does have Me!"
                        "My MS is a Journey for One."
                        Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                        Comment

                          #13
                          Nah, my Dad refused on my behalf,bless him.
                          It was pretty plain from the MRI that things weren't as they should have been.

                          Comment

                            #14
                            Wondering the same thing

                            Katie- I have been wondering the same thing. Was diagnosed in Singapore this last February. My doctor said I could do a LP if I wanted but he said regardless of the results he would still recommend starting treatment so I opted not to do it.

                            I am going back to Texas for the summer and seeing a MS specialist in Houston. I have been wondering what test, if any, he will want me to do. I have Aetna global insurance that when used outside of the US requires no pre-approval for medicines but when I move back home I will have to have approval. I have been wondering if a LP would be required by insurance before they approve treatment.

                            Comment

                              #15
                              I was diagnosed in 2007. My MRI was equivocal so I also had an LP. I had O-bands in my CSF and not my blood, but even still I was only given a diagnosis of CIS at that time. I also needed a blood patch the next day but man does the blood patch work!

                              That was actually my second LP, the first having been done when I was a young child to confirm meningitis.

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