Has anyone had a followup lumbar puncture?

    • Anonymous
      October 20, 2008 at 1:59 pm

      Over 6 years ago, I was diagnosed with CIDP. Over the next couple years, I received several IVIG and solumedrol/prednisone treatments, but never improved. Eventually, my diagnosis shifted to an undetermined myopathy. Recently, neurologist #8 asked me to have another lumbar puncture done to restart the diagnosis process. Lo and behold, my CSF protein came back higher than it had 6 years ago (85 vs 68) leaving her to think that I may have a CIDP variant.

      But this got me wondering, how many people have actually had follow up lumbar punctures and what their results were? I guess I would assume that protein levels would be reduced following treatments, but I’ve never seen documentation.

      I’e really appreciate hearing from anyone who has had multiple LP’s and what the results were.

      Thanks,
      Dave

    • Anonymous
      October 20, 2008 at 6:58 pm

      Hi Dave, Welcome to The Family. Yes I have had 13 lps, of which 11 have been in the last 8 years. A lp is not a true test for cidp, there are those of us who have normal levels and still have cidp. 5% of cidp people have normal ranges. Ivig can have an effect on lp results, as can other things. I’m with you as far as going through a number of drs though, not by choice though. How do your other tests look? A single test usually can’t make the dx. Have your drs brought up plasma exchange? 70% of cidp people respond to ivig and 70% respond to pp. Just curious what made them think you don’t have cidp, being as there are sooo many variants. Hope you find something that can help you improve. Take care.

    • Anonymous
      October 21, 2008 at 9:10 am

      My daughter, Emily, has had 2 follow up LP’s. Her 1st LP had a protein level of, I think, 92, the 2nd was 96 & the 3rd was 50. (These numbers might be off a bit because it was a few years ago)

      After her 1st LP she was dx’d with GBS & put on IVIG. 3 months after her last infusion she relapsed, had another LP & was dx’d with CIDP. The 3rd LP was about 1 year after her 1st relapse with another neuro. She had been getting regular IVIG treatments during that year. So yes, IVIG can make your protein levels go down but I don’t know for how long. I do know they can go back up if you aren’t on a regular treatment schedule.

      It is very possible you could have a variant of CIDP. Not all of them present the same way. My daughter has an unusual case & it took about 1 year to get her treatment schedule just right.

      Good luck!
      Kelly

    • Anonymous
      October 21, 2008 at 12:49 pm

      If somebody want to know about it, here are Oct 2008 neurolab serum test;
      Anti sulfatid 1/2500, Anti galatocerebrosid 1/3500, Anti MAG 1/1500
      Anti GD1a 1/7500, Anti GQ1b 1/150, Anti GM1 1/750, Anti GM2 1/3000,
      Anti GM3 1/3500, Anti GM4 1/500
      I have strong fatigue, can walk quite well, some sciatica in one leg,
      back pain, pharestias and pain in both arms, and face.

      Best wishes,
      Pablo,

    • Anonymous
      October 21, 2008 at 8:56 pm

      Thanks for the replies.

      Cheryl, my original diagnosis was based on the elevated protein, absent reflexes, symmetric weakness, strange neurological sensations, and EMG/NCV testing. Neuro 1 was disappointed in me when I wasn’t immediately better after two days of IVIG. After one more round of IVIG and a couple of unsuccessful rounds of steroids, he basically dismissed me. The next four doctors weren’t convinced anything was wrong with me.

      A nerve biopsy about 4 years ago confirmed demyelination and axonal damage. I also had a muscle biopsy which showed evidence of myopathy. A subsequent EMG/NCV showed strong indications of myopathy – in fact, MDA accepted me as a client.

      Recently, my MDA neurologist “inherited” a patient who had a long standing diagnosis of Spinal Muscular Atrophy. She happened to open her file and noticed that many years ago, a high anti-GM1 antibody reading was ignored. She had her patient retested and the reading was still high. The patient was put on a regular regimen of a high dose of IVIG and regained significant use of her hands. Not something you’d expect from SMA! So the doctor is thinking I may have a variant of CIDP.

      My recent test showed that my GM1 was mildly elevated. I think we may be looking at a longer more persistent course of a higher dose of IVIG or else Cytoxin. We will see.

    • Anonymous
      October 22, 2008 at 10:56 am

      I asked my neuro yesterday about the protein levels. He said that is a good question however most of us never get repeat spinal fluids tested. Once the diagnosis is made they just use the improvement of symptoms to gage the treatment. So that is the answer I got.

    • Anonymous
      October 26, 2008 at 1:22 pm

      Dave,

      The LP is part of the diagnosis toolbox. The CFS protein level is high when the disease is active. But here again, it is a tool. Maybe the neuro didn’t trust the result the first one provided. Maybe they just wanted confirmation. Many cases of CIDP have been diagnosed without a LP.

      PERSONAL OPINION…. I don’t know why they would want to do another one. The initail one would provide the answer. If they did a nerve biopsy, would they do another?? Why repeat something if you don’t have to?? Why invade the body?? Too many questions for me. The one test gives enough information.

      I remember we talked about this before, a long time ago. There are better tests to see if there is clinical improvement, or worsening, without exposing the body to more punctures etc. Besides, as others have said, the LP varies from time to time.

      As to your results. The norm tops out at 45 I think. Mine was 56. Some folks here have been as high as 300 and some. Many have been in the 100’s. The difference between 85 and 68, although significant, would not be so much a difference to change either diagnosis or treatment, just to confirm what has been going on.

      I don’t in any way mean to minimize what you are going through, your issues are significant. I went through several neuro’s before getting the correct diagnosis. The best thing you can do is to read and learn. An informed patient helps his Dr. more that one who can’t communicate with the Dr.

      Good luck !!

    • Anonymous
      October 27, 2008 at 6:08 pm

      Dick:

      Two reasons to repeat an LP:
      1 – testing for antibodies that weren’t considered in the first test.
      2 – I have evidence of a muscle disease as well (based on muscle biopsy and EMG results). Since previous IVIG/steroid treatments did me no good, the question is how much of my disability is neuropathy related, and how much is myopathy related. A change in results (such as normal protein levels) could indicate that the neuropathy was no longer an issue and further treatments like Cytoxan would not be beneficial.

    • Anonymous
      October 27, 2008 at 8:55 pm

      [QUOTE=edirullet]Dick:

      Two reasons to repeat an LP:
      1 – testing for antibodies that weren’t considered in the first test.
      2 – I have evidence of a muscle disease as well (based on muscle biopsy and EMG results). Since previous IVIG/steroid treatments did me no good, the question is how much of my disability is neuropathy related, and how much is myopathy related. A change in results (such as normal protein levels) could indicate that the neuropathy was no longer an issue and further treatments like Cytoxan would not be beneficial.[/QUOTE]
      Is the muscle disease treatable?
      Laurel

    • Anonymous
      October 27, 2008 at 10:02 pm

      Hi Laurel! I was asking that question too! 8 dead muscles in my legs. I just wonder if it would treat muscle damage too!

    • Anonymous
      October 28, 2008 at 4:21 am

      I thought that spinal tap was for protein level check, and antibody test was done on serum, didn´t know it was done on spinal tap.