I still haven't had a lumbar puncture, but have heard many scary stories about it. Could you please tell me about your experience with it?
No responses to your post yet, Dana. Have you gone to the very top right of this page and tried a search for it? That may lead you to some information, or perhaps to someone who you could PM to find out what their experience was like.
My experience was that it is uncomfortable, but not unbearable. It was not as bad as I anticipated. I would not worry to much about it. ( and I am a worrier)
My experience was not bad at all. The whole thing took less than 15 minutes and was relatively painless. No after effects. This was how I was diagnosed -- the amount of protein in by spinal fluid.
I had two. I was ticklish and had some hypersensitivity to touch. The second time they numbed the area with a cream. That helped a lot. I layed flat for an hour, reclined maybe two. They say longer but I didn't have any troubles after with either.
I saw your posts that you tested negative with the emg/ncs. Have you tested for small fiber neuropathy? That will not show up with emg/ncs and reflexes can still be normal. I know your looking for answers. I hope you find some.
My experience was very good; once I arrived. Leading to it I had similar angst. During the procedure, I was calm and just stared at a spot on the wall. The physician numbed the area and talked me through it. I didn't feel anything. I also remember it lasting no more than 15 minutes. Post procedure, I followed the instructions in drinking lots of water and resting for a few days. I did not get headaches. My prior EMG (2nd EMG), my physical exam, progression pointed to CIDP. The protein in the spinal tap was final diagnostic to omit any doubt.
Thank you all for replying. One question I have is: how can they tell if it's CIDP or MS since in both cases the diagnosis is made if there is a high amount or protein in the CSF?
From what I was told, my symptoms were appearing equally on both sides of my body.When I had paresthesia, it was in both hands. When my legs were weak, it was both, etc.. This ruled out MS. I also happened to have a recent brain MRI. That was the first thing my original neurologist looked at. Not sure what he was looking for in the MRI to be honest.
For me lumbar puncture varied a lot. I had it done three times in the space of 4 months or so and the first time was relatively good but the second time was incredibly painful during the procedure. Third time was the worst, the doctor hit a nerve leading to spasms in my foot and then afterwards, even with 6 hours of lying down and an infusion of water I got terrible headaches which were so bad I could barely stand up. All three times had a dull ache in my back for a couple days afterwards. I think I was an exception though since during my hospital stays a couple of my room mates had a lumbar puncture and they were fine after a few hours. Good luck :)
No problem, with it you have to lay flat for 2 hours or you get a headache. A friend had one and she said she had problem with they inserted on the way home and she had to go back. I was fine not problem