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Did anyone here receive their diagnosis through a lumbar puncture and did it take more then one?

I’m looking for anyone who received their diagnosis through a lumbar puncture and if it took more then one? Did you find that you needed to be relapsing when you had your spinal tap in order to get accurately diagnosed? 

Suffering with MS symptoms

I’ve been suffering with the symptoms of MS. Lightening or kaleidoscope effect in the eyes, MS Hug, chronic lower back pain that’s been diagnosed as musculoskeletal. All of which I’ve been suffering from for about 6 years now. Now in the last couple of years things have gotten worse and new symptoms have presented themselves.

Spinal tap was my only options

I have nerve pain in my left foot that never goes away, with being on Topiramate I wake up with a headache every day and suffer from 2-3 mirages a week. Numbness and tingling in my hands and feet. Overactive bladder and GI issues, and muscle spasticity. I’ve had every blood test imaginable... negative for Lyme disease, Lupus, Mono, and not deficient in any vitamins. I can’t have an MRI so the spinal tap was my only option and that came back showing no sign of MS. At the time of having it done, I felt good though and just wonder if maybe this is something that really needs to be done during an exacerbation. Or if anyone else has had a negative spinal tap only to have another done later on with different results. Thanks!

  1. It usually takes more than a spinal tap alone to diagnose MS (https://multiplesclerosis.net/living-with-ms/joy-getting-spinal-tap/), mostly because positive results could be MS but could also be a sign of a number of other issues as well. It's useful in narrowing down the list of issues, but impossible to accurately diagnose from it alone (and it shouldn't matter that you are in an exacerbation or not). Diagnosing MS is difficult, a spinal tap is part of it, as is an MRI, but many times they also looked at Evoked Potentials (https://multiplesclerosis.net/living-with-ms/joy-evoked-potentials/) to help make the diagnosis. Sometimes the diagnosis is made be eliminating other possible causes too, though that is rare.

    1. In my case, a lumbar puncture (LP) was the final test and lead to an MS diagnosis. That was after six years of testing and retesting using MRIs, Evoked Potentials, physical exams, an EMG, and several LPs. The final LP was done when I wasn't in a relapse or fighting an infection, and the positive result removed all doubt for my neurologist that it was MS.

      1. My first episode with MS my wife found me unconscious in the shower. After three weeks of testing my heart I told them I had a numb toe. then they called in a neurologist and all the Neuro tests began the final test was the LP and that was conclusive that I had MS. I just want you to know the test sounds worse than it is.

        1. Thank you so much 6mtbde for sharing your reply to this. I am so happy to hear that your wife found you! What an awful experience, to go unconscious while bathing or showering.
          It's so good that the doctor was able to get to the bottom of things and am VERY happy that the LP sounds as if it wasn't that bad for you... that's an encouragement!
          Janus

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