Well it isn't like I'm looking forward to the spinal tap, but if the spinal tap is what needs to be done to get some answers then I'm getting a spinal tap. I guess what I'm saying is, don't rule it out just because it sounds scary. If they need it to diagnose, I'd suggest you get it.

Having said that, I know not everyone has to get a spinal tap for a diagnosis. Everyone's path is a little different depending on the doctor and what results they get out of the various tests.

Right, of course I won't rule it out. Obviously I'll do anything that they need, but I'm just expressing my preferences! I've heard from multiple people that it isn't a bad as it sounds...

some folks lay down, grit their teeth and say "im ready!" and the MD says "we are almost done" others lay down, grit their teeth and moan thru it. It helps if you really try to relax those muscles. it helps if they dont have to dig thru 100 pounds of extra weight to find the sweet spot. it helps if you find your happy place and are able to distract yourself. If you keep a severe headache afterwards they will do what is known as a blood patch. this can happen if the hole doesnt close correctly and you leak spinal fluid. it can cause a monster headache. So, LAY DOWN and stay down after the test. let your body heal.

Wishing you the best of luck.

Hey I understand, really I do. I audibly groaned at the neurologist when he said spinal tap!

Spinal taps can be good and bad. I have seen one done on my mom and it was over in a few minutes and she had next to no pain. Mine took about 90 minutes over two days. The doctor on the first day couldn't get the needle in because my back muscles were spasming and locking up the needle. I had to quit and come back the next day for a different doc to do it.

As for the CSF flow fix theory, if "fixing your CSF flow abnormality" cures your MS, I tend to doubt that you actually had MS. You more likely had a CSF flow abnormality that was mimicing MS. If MS was caused by CSF flow problems, it is likely that we would have figured it out by now and the docs wouldn't still be searching for a cause. Like others, I would appreciate more info in a separate thread because the idea is interesting to me, but color me initially very skeptical. This sounds alot like the "stopping drinking diet sodas cured my MS" type of theory that we see all the time.

im so sorry my autn has relapsing remitting MS...PT is a good key

Hi bowdowntobri,

There are some who get diagnosed with Clinically Isolated Syndrome (CIS) which is a first Neurological event and could possibly turn into a definite diagnosis of MS.

Several years ago there was another term that popped up due to what has happened to you. People have gone in for a MRI which had nothing to do with MS and have been told the MRI is suspicious for MS.

The term is Radiologically Isolated Syndrome (RIS). There are differing opinions, in the medical community, if treatment should be started or simply watched to see what happens. Many of those with RIS have no Neurological symptoms.

Oh goodness, even more things to thinks about. Thanks for telling me Snoopy, I hadn't heard of either of those before!

Hi Sabrina, and welcome to NeuroTalk! I hope you get some real answers soon.


It will work because of a theory? Add me to the list of skeptics. Glad Carol got relief, but there are no definitives when dealing with MS.

If you haven't already, look up the McDonald Diagnostic Criteria for MS. I was given a CIS diagnosis initially...probably would have been RIS now that the term exists. I got an MRI for hearing loss and they found 2 lesions (high intensity or bright spots on the MRI). I had one "event" (the hearing loss) and only 2 lesions, with a negative spinal tap. So the doc told me I didn't have enough lesions or lesions in the right spots to satisfy the diagnostic criteria.

I didn't understand (or even know about) the McDonald criteria at the time, so I thought she was saying that the lesions didn't look like MS. So I spent the next two years convincing myself I didn't have MS. Then after a followup MRI showed more lesions, she suddenly said the equivalent of ok, you meet the criteria now, I can call it MS...what treatment do you want to try? What she meant was that I now had 3 or more lesions, with some appearing separated by more than 6 months...so now I met the criteria.