Lumbar puncture

[lupus_paradise]

Hi fellow warriorsFollowing my strange tremors at night, the doctor ordered an EEG (fine) and an MRI. Because the MRI showed a focal lesion the doctor has referred me for a lumbar puncture next week to check for demyelination. After reading up on this procedure it doesn't sound very nice. Has anyone else had this done? And anyone else with this possible combo of lupus and demyelination? Thanks!

[OldTed60]

I had an LP years ago for same/ similar symptoms. It was a bit traumatic tap as turns out I’ve got badly compressed lumbar discs so took the dr many attempts - she was most apologetic and only just got enough non contaminated (blood) fluid for a result. But on very plus side she said that all the attempts and bleeding meant that I wouldn’t get CSF headache after and she was right. I made an immediate recovery no headache at all.

Advice - drink plenty first and ask for lots of local anaesthetic. On plus side it is over with quite quickly, pain prob on par with standard dental procedures and worst issue would likely be the headache afterwards. I’ve had CSF headaches after a bad fall thanks to EDS scoliosis once. This lasted a few weeks and not fun - so prep for this as worst but good to know what’s going on and hopefully get central nervous system stuff excluded. Mine showed matched bands confirming a systemic process was causing my neuro issues - no surprises there!

Best of luck😊

OT60

[CecilyParsley]

I had a lumbar puncture a few years ago. Honestly compaired to my everyday pain it was relatively easy and over quickly. I felt absolutely fine afterwards . Good luck with yours xx

[dg70]

Yep had two myself and no problem (almost). It is uncomfortable but doesn't last long. Insist on an experienced person to do it. One of mine was with a trainee who was being supervised but they got it in the wrong place at first and its just extra stress you don't need. It is a good diagnostic tool and sometimes the only tool left to use. I have lupus and sjogrens and neuropathy and had no issues during or after.

[DebbieJ6894]

I've had a lumbar puncture. You have a local anaesthetic. It's not particularly nice but I've definitely had worse procedures. It doesn't take very long to do. Good luck.

[MrsMarigold]

Hi I’ve had 2 and both were uneventful. They put anesthetic I first. Also had the lesion(s) you referred to and it turned out to be nothing that worried the neurologist so it did not change my lupus diagnosis.

Good luck. 👍

[Galaxy2]

Hi there, you’ve had some good replies already I see . It’s thought of as not a nice procedure but really can be painless.

I’ve had 2 , the second this year and a really good experience, I learnt from the first which wasn’t as positive. I spoke at length to the doctor doing it the second time and he made absolutely sure that the local anaesthetic had taken full effect first and examined my spine so throughly to work out the best place to access it. He throughout the procedure asked if I was ok and put me at ease. I didn’t feel a thing.

Hope it goes well and you get some answers too

[lupus_paradise]

Thanks everyone for your great advice! My appointment was delayed but then it happened. Not fun, but no after effects so I can't complain. And I had the nicest Dr. And the results were all negative. A big relief. No explanation for my symptoms but I'm ok with that as long as it doesn't get worse.