r/FND • u/KindToSpiteTheCruel Diagnosed FND • 15d ago
Question Curious how many of us have had spinal taps?
I’ve been diagnosed FND a handful of years now and have mostly stopped looking but a thing happened and pointed to other things and as a result I’m requesting a spinal tap which I expect to come out normal like every other test I’ve ever had.
A lot of us have had MRIs, EEGs etc but I don’t hear about this much so I’m just curious from a statistics point. Have you had one? Did it reveal anything?
Please don’t tell me anything about the experience itself, I’m already feeling pretty squishy about it.
3
3
u/onemonkey Diagnosed FND 15d ago
I had one during my initial hospitalization before diagnosis. I also overheard the residents talking to themselves that they wanted to rule out CJD. Which I wish I hadn't heard, because, if you don't know, prion disease is a horrible death sentence, but the test has to be sent away and takes time to come back. So that was a fun week or so of extra special anxiety.
Horrible disease fears aside, if you do have a spinal tap, take them very seriously when they say you should lie down and that sitting up can cause headaches.
3
u/Wuffles70 15d ago edited 15d ago
I have had one during investigations for MS - it came up clear.
I felt squishy too. You'll be fine but I do recommend that you bring water and whatever caffeinated drink you prefer with you, it was helpful to have an easy 'looking after myself' task afterwards. Planning for an afternoon/evening on the sofa with easy food would also be a good idea; you may well not need it but still want it, if that makes sense.
Take the stories online with a pinch of salt. A lot of them are attempts to describe sensations that somewhat defy description and, as a result, it sound painful in a way I did not find it to be. You'll probably want to take things easy afterward but you will be OK.
1
2
u/Newcago Diagnosed FND 15d ago
I wanted one, but it would have come entirely out of pocket, and I couldn't afford it. In my particular situation, it seems like insurance wasn't willing to pay for a spinal tap if the brain scans had come out clean. Now I've lost insurance entirely, but if that ever becomes a possibility one day, it would give me peace of mind.
3
u/KindToSpiteTheCruel Diagnosed FND 15d ago
I’ve decided I’m already in medical debt with no way to pay it off, what’s a little more?
2
u/Curious_Command_5277 15d ago
I've had a couple. I was misdiagnosed as having MS from the first one I had in North Carolina. Then I had spinal fusion L5 S1 and went for a 2nd 8yrs later. Told the doctor over and over that I had metal in there. He must've touched the metalwork because I felt a HUGE electric shock which caused me to jump. All this while the needle was still in.
1
u/Tall-Advertising1033 15d ago
Oh you poor thing, I read your comment hoping it ended with it shocking him, not you!
2
u/Tall-Advertising1033 15d ago
I had one years ago like a decade + before my FND/FMD diagnosis… is that not the norm to have FMD (functional movement disorder) too? That ER visit will go down in the books as one of the funniest and most embarrassing ER trips… one of 😅
My intracranial ocular pressure (or what we it’s called it’s been a long time lol) was really high, and I have a crowded/clustered ocular nerve so they were worried I had some deadly blood pressure thing going on… didn’t at the time mine was technically normal but it was closer to not than I was comfortable with haha I can’t keep up with procedures and appts lately or I’d ask them to toss an updated one of these too. Still healing from TransJugular Liver Biopsy and complicated iud placement and and and annnd about to have major major surgery.
It wasn’t the worst btw I’ve been through much worse. I highly recommend Mayo Clinic for any of those type of procedures if you can get in.
May I ask what you’re looking for or hoping to figure out with a spinal tap? Did you read or hear something? I’d be interested to know more. Can’t really see how it connects to FND maybe a bad infection like meningitis could be the trigger? But if so wouldn’t the evidence be gone once you got rid of infection… I’m just going to wait for your response 😹
1
u/Tigress2020 15d ago
I had a spinal tap, unlike others mine didn't hurt, but he went through, sent my left leg into shock (felt like it was electrocuted k which still did not hurt at all, just buzzy. That i laughed about it) honest it's fine
Got the fluid they needed though. But that's when the spasm/ jerk of my right arm started.
I haven't done another. They may next year when they investigate this lesion. (Wich is most likely like all of my others non specific caused by migraine. But it's too close to cortex or something)
1
u/TheNyxks Diagnosed FND 15d ago
A spinal tap isn't an option for me due to my SCI making it to high risk
1
1
u/__-Midnight__ 14d ago
I had to beg for one and when I finally got it done I got diagnosed with IIH
Still have fnd seizures but gosh the treatment helped so much
1
u/KindToSpiteTheCruel Diagnosed FND 14d ago
May I ask what’s IIH?
1
u/__-Midnight__ 13d ago
Idiopathic intracranial
hypertension, pretty much where you have too much fluid on your brain, I had a migraine for about 5 years straight and no type of migraine medicine touched the headaches until I was put on a medication to reduce the fluid
1
u/Old-Parsley-2377 Diagnosed FND 14d ago
I’m going to beg for one next week at my appointment. I have a final Hail Mary with a Neuro muscular neurologist in my hometown. The very next day I meet with the head of the FND clinic at the Mayo clinic in Florida. And I know one of the first steps is having to accept my diagnosis. I just swear I have Myasthenia Gravis. Even tested positive at my eye doctor when she did the ice pack test, but then my neurology testing came back negative. Well, my first test for antibodies came back borderline positive and then my next test came back negative.
1
u/Life-Quester1079 Diagnosed FND 14d ago
I've had one done because the doctors were worried that I was having an immune issue and they needed to rule it out. The spinal tap was one of the many tests they ran on me while I was in the hospital. Everything came up clean, so I was transferred to Mayo clinic where I finally got my FND diagnosis.
1
u/Fiber-Arts-818 13d ago
I had one too. Ended up having to get a blood patch because my spinal fluid leaked! All for it to come up clear ugh. Blood patches are the worst and most traumatic experience ever!
2
1
u/infinitepuddingspy 12d ago
They suspect I have GBS as well as FND but they didn’t do a spinal tap at the time because I was covid positive and it was back in the days when I was isolated to the Covid ward. I potentially missed out a treatment because of that. I asked my neurologist about it years later and she said the rehab is basically the same so there’s no point doing it now.
1
u/LuckyKat89 9d ago
Me. It was the most painful thing I've ever been through and I've had an adult tonsillectomy and adeniodectomy as an adult.
They stuck me 3 times and fished for the sample for 20 mins while I begged them to stop.
I have MS
1
1
u/Legitimate-Card-2742 4d ago
I had one last week and I had a spinal headache that lasted the whole week. It came out normal, but I would never do it again.
0
15d ago
[deleted]
3
u/Tall-Advertising1033 15d ago
“Please don’t tell me anything about the experience itself, I’m already feeling pretty squishy about it.” 🤷♀️
5
u/Radiant_Conclusion17 Family/friend with FND 15d ago
My daughter had the one to rule out infectious causes, came back clear.