To get spinal tap or not?

Posted , 9 users are following.

In the last 5 months I've had 2 brain MRIs without contrast, 1 with contrast, 1 CT without, and a full spinal (cervical, thoracic, lumbar) MRI with and without contrast. They have all come back normal.

My neuro wants me to have a spinal tap but I am questioning whether or not to have one. What are the chances of it showing something if I don't have any lesions? Is it worth the risks? I've read horrible stories on here from people who have had them done and quite honestly, I can't afford for my health to get worse. I'm on edge now with all my symptoms.

Any input would be nice.

Thank you.

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19 Replies

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  • Posted

    Hi, personally, I think it's better to go ahead and have a lumbar puncture done. For anyone getting a positive result, it gives a much more definitive diagnosis. When I went through the process of diagnosis, I had my brain MRI's come back with no identifiable lesions, which wasn't helpful, to say the least. My cervical spine MRI showed a large amount of lesions, blurring into one another. I still went ahead with a LP, though. I'm afraid of needles, so I was terrified, while they aren't pleasant things to spend your time doing, I'd gone through the usual turmoil of being in limbo, so I wanted as much, clear evidence. I've seen plenty of personal accounts of other people's experience of LP's, as far as I can see, the vast majority seem to be the worst ones, generally, you won't see the very many whose LP's are extremely mundane, we don't tend to mention ours. If you have a LP, you'll probably get a stinking great headache...and a much clearer picture.

    • Posted

      Yeah that's true. I know not many people who have good experiences post online. My cousin had one with no problems but I don't have her good luck lol

  • Posted

    Hello, I've never had one and I wouldn't, my mum had one years ago not for MS and was offered one a couple of years ago after ms diagnosis she said no and her next neuro said she did the right thing. I have ms diagnosis without. I've had a back op though but I understand that from op or tap you can develop arachnoiditis and I cannot decide whether done of my keg symptoms are ms or that. Good luck whichever way you go.

    • Posted

      Thank you! I guess it must depend on the neuro then.
  • Posted

    I recently decided NOT to go thru with the Lumbar Puncture.

    I think I made the wrong decision.  Because now I will stay in limbo for the diagnosis...

    Although, I had an ABNORMAL MRI...my Neurologist still wanted this procedure done.  I was also afraid of it.

    Looking back on my decision...really all that people complain about is having a headache.

    So...having a headache to me is dreadful...as I get enough headaches that keep me down.  I am on a personal journey of sobriety (from alcohol) and feeling better than I have in a long time.  I didn't want to have a set back from this procedure.

    But, I do feel that I regret not having the procedure.

    • Posted

      Thank you for your input. I'm afraid I'll regret not getting it as well but then I'm afraid I'll regret getting it. Looks like I'm stuck between a rock and a hard place.

  • Posted

    i am exactually the same no legions and am wondering wether to ask for another one i had one more than 20 years ago ,my daughter reminded me i said last time i" would never have one again"i dont remember. i do remember the head pain that dissaperes when you lie down.i haaav been ill on and off for 30odd years still no answers  . i hope you get an answer let me know .

    • Posted

      Hi Janet, if you do go ahead with another LP, it's definitely better, if MS is suspected, to have the LP when you feel that it's actively making you feel like it's progressing (or has just progressed), or like you're unwell, as o-bands might not be present when in remission. If they're looking for oligoclonic bands, they're more likely to find them then.

      MS is such a slippery little *******.

    • Posted

      Thank you very much. Let me know if you decide to get one and how it goes!
  • Posted

    I had a LP in July. I trusted my Neurologist to give me the best advice. I was so scared due to having lesions and syrinx in my spine. I have what some doctors call Chiari 0. Any fluctuation in CSF can cause problems . My symptoms were not all due to that medical issue. So I went through with it because I really wanted to get answers. My doctor was trying to help me so I needed to help myself by going ahead with his recommendation. I had the dreaded headache for two days .Then got meds which didn't touch the pain . Day six I had a blood patch and it was gone within an hour. The results along with other test led to diagnosis of MS. You are in charge of your health. No guarantees for any of us but having the choice is priceless. I hope you make the decision that only you know is right for you. Take care

    • Posted

      Thank you very much that's very true. My doctor told me she's lost so that's why she's ordering it. Being in limbo medical wise is so hard because you put your body through continuous testing and after so long you're just exhausted mentally and phayically. I think I'm just afraid I'll have a bad reaction to it and it'll create more problems for me. I'm so depressed as it is from all of this that its such a gamble to me.

      But thank you again for your input. It's appreciated.

  • Posted

    Am really sorry you had to go through this but my spinal tap went amazing. Mostly ppl have bad head aches because to be honest they dont follow what they have been told. Once u had the tap u are not allowed to move for 24 hr and u had to sleep still on ur back it is so frustrating I will tell u that but mine went well I slept on my back for 24 hr and pain full yes a bit ur body is going through an usual expirence. For a week my back hurted but it wasn't something like I read on the platform. And drink a lot of water after that it is a natular healer replaces the fluid . and my lesion was on my spine so it is worth taking . I said no at first but talked to people who had epidural during pregnancy to compare the pain level. Good luck thou.

    • Posted

      Thank you for the advice! I haven't had one yet I was questioning whether or not to have one. I've been talking to my friends who have had epidurals as well. My cousin had one and she had no issues other than some back pain. It seems inevitable at this point so thanks again you make me feel better about it.

  • Posted

    I forgot to mention, if you usually drink a lot of either tea, or coffee, and then only drink loads of water, for 2 days, you might experience caffeine withdrawal... which can cause really bad headaches (just to confuse things). I didn't realise this, so my post LP headaches lingered. Then, I put 2 and 2 together, had a strong cup of tea, voilà, no more headache.

    • Posted

      I don't drink any caffeine. I have anxiety and now since I have Menieres, I really can't drink it. But thank you for telling me!! Good advice to know.

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