Changes/Spinal Tap

[mookee]

Well I was wondering how many of you had a spinal tap after and MRI showed changes in your spinal cord?  And what do you think the doctor meant by changes?  I was so shaken by what he said I didn't even ask.  He told me that by talking to me it didn't seem like MS but now that he has seen the pictures he is not so sure.  So just waiting for the next step that spinal tap.  Is it painful??

[Deb61]

Not everyone has a good experience with the LP.  I for one didn't have a good experience with it, and on top of all of everything, the important part of the whole test--the o-band test results, were lost.  Yes, you heard me right!  I did, however, have other indicators like increased protein which helped with my diagnosis.  I was told my test was "inconclusive", but I know better.  Three months later, my neurologist told me that the o-band results weren't there yet.  I called and called, and finally I was told this inconclusive story.  When I got a copy of records, everything was there about my LP except the o-band results.  

On the day of my diagnosis, mMy neurologist was just about going to order another test, when my sister chimed in and asked if it was necessary, and thankfully he said, "no".  

I experienced three weeks of headaches.  I do recommend if you get an LP, to get one in the town where you live so you don't have to be jiggled around and to allow the sac to close up.  I would also recommend the blood patch if you get a headache.  Don't schedule work for the same day or next, either.  

I would say that if you're going round and round with no diagnosis, then yes, it's worth it.  However, it is not always a walk in the park.  I don't mean to scare you--there's nothing to fear.  If you get the headache, get the blood patch.  If I had it to do all over again, I would have gotten the blood patch after day 3 of the headache--not week 3.

Deb

[huff1711]

I had the LP and I didn't clot up, so I was having spinal headaches and I wouldn't wish them on my worst enemy. A week later had to go back in and have the blood patch to clot the hole and it fixed it instantly. Even with the complications, it was worth it to help get my diagnosis.

Chad

[RedFlame]

I had a lumbar puncture, it was not a painful experience for me but others have had different experiences.  The problem I had later was due to the fact that I didnt heed doctors orders.  Drink lots of water to hydrate yourself.  After the puncture lay flat for a couple of hours and then stay down or propped up on a pillow the next day for so.  

Mine showed O-Bands and high Igg.  

Try not to think too far in advance---I know it's really hard.  Hang in ther

Red

[COBOB]

I "spinal tap" is really a Lumbar Puncture.  The tap is made in the lumbar region of your back and the needle goes into the thecal space, much like a "spinal" for a pregnant woman.  I had an MRI that showed one lesion in my brain and none in my cervical spine.  Then I had an LP that was negative for Bands or IgG synthesis.  Then I had a second MRI 6 months later.  More lesions.  Only 23% of labs perform the isoelectric focusing technique correctly to detect the bands.  Even at that, about 10% of the clinically diagnosed MS population has no bands.  So Positive bands tell you something, negative CSF bands tells you very little.

Bob