Spinal Tap

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AfraidButNotAlone

Senior member
Joined
Jul 27, 2013
Messages
538
Reason
PALS
Diagnosis
07/2013
Country
US
State
GA
City
Atlanta
Has everyone with an ALS diagnosis had a spinal tap?

I certainly don't want one, but...
 
Did not have one.

They asked me to get one, my wife asked what are the risks?
Dr said if I have had a stroke, the spinal tap could kill me, but he didn't think I have had a stroke.
We choose to wait for the MRI first.

The MRI showed 2 strokes, Dr never mentioned the spinal tap again.
 
Ah..... LOL
I haven't had a stroke....that I know of
 
I had one. Don't want to ever do that again. Worst pain I ever went thriugh
 
I had a tap (actually 4) when I had meningitis. It took a neuro to get in properly. Sprung a leak 3days later. That was no fun.
 
Don't know if it's standard procedure during the diagnosing phase to eliminate other diseases. I had it done after multiple blood tests, 2 MRIs and nerve conduction tests. Every test was negative. A 3rd MRI showed "abnormal signals". An EMG confirmed ALS.

Good luck.
 
My sister had one. She also had evoked potentials. I think they were hoping for MS even with our FALS history.
Re the pain. Think it is both individual and depends a lot on the person doing the tap. I have had 3 all by different ALS specialists one was very easy one minimally uncomfortable and one moderately uncomfortable. I have another coming up with another ALS neuro. Hoping he falls in the less uncomfortable group!
 
Good luck Nikki, the doc must have hit directly on a nerve when he did mine. My left leg tightened up top to bottom like the worst Charlie horse you could imagine, also felt like it was on fire
 
Thank you!
That sounds awful. The worst one I had I think he brushed a nerve as I felt it shoot down my leg but nothing like you endured!
 
I had one, zero pain... I was numbed first but still a bad experience. Although I didn't feel pain, my body knew something was up, I broke out in a cold sweat and started hyperventilating. Normally a spinal tap is looking at your CSF for MS markers or signs of antibodies of certain viral infections like Gillian Barr... It is a step many of us take to rule out everything else.
 
I had one a few months back....I think current terminology is "Lumbar Puncture". They took about 12cc of spinal fluid to analyze the proteins etc.
This test is really precise, if the person does not get a clean shot at the spinal cord, it ruins the test by getting blood in the spinal fluid. They had this scenario on me, and wanted to do a follow up in two weeks. My first EMG was done the following week and those results saved me from getting another lumbar puncture.
I had 5 MRI's, a Cat Scan, 2 EMG's, and about 6 blood tests. And I have to say the lumbar puncture was the biggest pain in the azz, especially because they make you lay flat for 48 hours after while the fluid builds back up.
I didn't like the MRI's either, because I am 6' 5" and go about 320 lbs. Talk about a case of claustrophobia, I'm talking if I weighed 5 lbs more they would not have been able to get me in the tube.....it sucked!
 
I think Appell's clinic does them by default for the three day diagnosis ordeal ... I don't know how diagnostically important, but from their research perspective it is mainstream ... Google Davir Beers foxp3 Stanley Appell
 
are the docs suggesting one for you now? are they questioning your diagnosis? I didn't think a spinal tap was SOP for ALS diagnosis.
 
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