This topic contains 12 replies, has 7 voices, and was last updated by  Jacqueline 7 months, 1 week ago.

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  • #15615
     Debi Wilson 
    Member

    Have you ever  had a lumbar puncture to  help diagnose  your MS? If so, how did that procedure go for you?

  • #15618
     Anonymous

    Yes I did, and I was nervous, so I asked for a chill pill, and it all went very well.  but the next day my back really hurt.

  • #15620
     Debi Wilson 
    Member

    Sorry about the pain Jilly!  Did it  confirm your MS diagnosis?

  • #15623
     Jacqueline 
    Participant

    No I was not offered a lumbar puncture, my consultant said that I was suffering anxiety so didn’t think it would be beneficial, guess he assumed I wouldn’t be able to have coped with it, and maybe not…as he said he was as sure as could be it was definitely PPMS…I have no reasons to doubt it, or to have doubted him…I have heard that a lumbar puncture is the be all to diagnosing MS, after having the MRI scan with Gadolinium Contrast that is…and of course I did have that toxic injection in my vein after my previous ( three weeks ) MRI scan without gadolinium…

    I am told having the lumbar puncture is not pleasant…but then, so is having our MS, not pleasant at all…

    Jackie…

  • #15632
     Joan Bondira 
    Participant

    Yes, I have had two. I didn’t think either was too bad. I know it sounds horrible, and you think “you want to do what to my what?!?” but if anyone reading this is facing one, you will get through it, honest. If you’ve ever had anything like an injection in your hip or knee or neck, it’s not really much worse. And like Jilleen said, if you’re really scared, some medication to calm you could help.

  • #15635
     Ed Tobias 
    Keymaster

    Joan,

    I feel the way that you do.

    Though an LP isn’t a definitive test for MS it’s regularly used, combined with other tests, as part of the McDonald Protocol for making that diagnosis.

    The best advice that I was given was to remain flat on my back, moving my head as little as humanly possible for several hours following the LP, to avoid a headache. It worked!

    Ed

     

  • #15636
     Anonymous

    Joan, you made me laugh with the “you want to do what to my what” lol.  Well I googled it, its a long needle.  The chill pill was just the ticket to relax me so I didn’t move.  I recommend a chill pill.  And the doctor was  really nice and the nurse stay with me holding my hand and talked to me for support.

    Debi, as far as I know the LP showed MS, which came after the MRI, of which I saw little white spots in my brain and spine.

  • #15722
     Haslie Kemp 
    Participant

    Yes in 2010 with SPMS after about 30 years of symptoms and already in a power chair because of weakness in my arms and legs and balance. So when I got the diagnosed I had already been through the worse not knowing not being on any MS modifying drugs. Now at age 79 and I am doing fine with the symptoms I am having. About once or twice a year I get three days of Solu-Medral. My doctor says I have a mild case of MS called benign MS. No problems with the spinal tap. Have only two scars in my brain and they are old. Have been told I do not have MS because the scars are not Dawson Fingers but my doctor says otherwise. Got my diagnose with the spinal tap. I am concerned about the MIRs contrast. Have had 11 since 2005.  I have some symptoms of Gadolinium toxicity.

  • #15723
     Debi Wilson 
    Member

    That is interesting, Haslie thank-you for sharing!

    I agree about Gadolinium, luckily there are other dye choices.  Talk it over with your neurologist.

  • #15724
     Ann M 
    Participant

    Yes, I had one. Nervous as heck when I had it, yet it did confirm diagnosis. Took me 2 days to recoup (I was the fool that went back to work afterwards).  I’ll never forget my spinal tap, I have a permanent scar, lump on my back, thanks to the idiot dr. (don’t see him anymore).

     

     

     

     

  • #15725
     Ed Tobias 
    Keymaster

    Hi Haslie,

    I’ve been getting MRIs with a contrast agent since gadolinium was introduced. At the rate of about one a year I’ve had a lot of that die. I’m concerned about it but the benefits of an MRI with contrast outweigh the risks for me. Here’s something I wrote a year ago on that subject.

    Ed

    Worrying About the Dye Used in My MRIs

     

    • This reply was modified 7 months, 2 weeks ago by  Ed Tobias.
    • #15728
       Debi Wilson 
      Member

      I’m sorry  you had such a terrible experience Ann !

  • #15729
     Jacqueline 
    Participant

    I have a fear-concerns over putting any chemical substances into my body…I will always do my best on keeping them out…No lumber puncture but one Gadolinium Contrast, told it could take up to a year before it gets flushed out, to drink plenty of water, that was the first thing I done once I got home, just wanted to flush it out from my system, its toxicity, it was something that shouldn’t have been there, it didn’t belong there…

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