posted
My LLMD neuro wants me to have a spinal tap to rule out MS. My LLMD doesn't think I need it, but said go ahead if it will help with ruling out MS.
Here are my questions: Was the procedure itself uneventful?
Did you get the spinal headache?
Are you female or male? (it seems women have spinal headaches more often than men)
Were the results helpful? Thanks in advance for anyone who can help. This sight is a lifesaver.
Posts: 69 | Registered: Jun 2005
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posted
Yes , I have had 2 spinal taps and niether one was able to rule in or out MS or lyme. I got a nasty headache from the first one,partly my fault as I didn't go home and lay down as suggested . Second time They did a blood patch(inject blood into tap site) and headache was very minimul . Don't think I'll let them talk me into another one unless the tests prove tobe much more accurate !!! IMHO.
Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I had two spinal taps to rule out MS, 2 years apart. I did not get a headache, because mine were done so long ago that I was kept in the hospital overnight and laid down the whole time. Neither test hurt at all. I am female.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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I was in a "rule everything out" mode when I had mine done. And since I had neuro issues and headaches, did the LP. The procedure itself went well. Wasn't a lot of pain, but I'd characterized is as more of a "pressure" type of feeling in my head. This can also depend on the experience and skill of your Neuro Doc.
It did not show Lyme, but it also did not show any of the traditional Neuro issues that they test for...including MS, and THAT knowledge, for me, made it worth it...again...eliminating all other possibilities.
I did not have the headache...I made SURE I didn't do much of anything for 3 days. If you do it, I recommend you do it on a Friday...if you have the weekends off.
It's a scary procedure to think about, but I'm glad I did it.
-------------------- Bill
**Question everything...it may save your life!!!** Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
a spinal tap alone will not rule out (or in) ms.
make sure you have all your ducks(sorry) in a row if you do this to yourself
it was pretty much the worst procedure i ever had..it was POSITIVE..and the ins co still figured out a way to not give me iv abx
took me weeks to recover
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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I would never do it again. I was recently hospitalized again in August, and the first thing I told them is that I would never do it again.
I personally think it is a waste. You don't feel good anyway, and then someone wants to stick a needle in your back. The tested showed absolutely nothing.
I sure someone hear can tell you the percentage of LP actually show Lyme.
I'd rather stick a needle in my eye, than do that again.
Posts: 175 | From Pa | Registered: Aug 2006
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quote:Originally posted by Katcon: I personally think it is a waste. You don't feel good anyway, and then someone wants to stick a needle in your back. The tested showed absolutely nothing.
I sure someone hear can tell you the percentage of LP actually show Lyme.
I believe it's 20-30% accurate for finding Lyme. Not sure how effective at finding MS, but since there's no iron-clad test for MS, I'm sure it isn't any better.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I had an LP done as part of a rule out diagnosis in 1993. I didn't know any better. I wouldn't do that ever again and suggest if you can not have one don't!
It was painful despite the local they gave me and the Demerol.
Spinal fluid leaked and I got that headache, the one that makes migraines seem like a party.
I was given 2 doses of steriods 2 days apart along with my Rocephin to stop it. The next step would have been a blood patch.
The internal headache kept me in the hospital for 10 days feeling like my scull would blow apart. There's nothing in the world that touches it.
Now, all that said some people don't have bad experiences but, for me, I wouldn't take that chance ever again.
I am female and the results showed no protiens (or whatever) they were looking for for MS. Neither did they catch a spirochete.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Female. Had back spasms. Ruled out ms but did not show anything else. I would only have one done is my life depended on it only. Was very uncomfortable after the procedure.
Posts: 719 | From Delaware | Registered: Jan 2006
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WildCondor
Unregistered
posted
Female, hurt like hell, passed out, got a spinal headache, and it proved nothing and was totally useless. It misses Lyme in most cases. The MRI of the brain showed lesions and neurologists said I had MS, which was total BS! if your LLMD wants you to have a spinal tap, do it, if a duck wants you to, run!
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
yep, very painful & missed my lyme at my sickest.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Nancy....you got the truth. What to do with it is your decision. I hope we helped you decide.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hubby had a spinal......didn't have any problems with it. He had to remain at the hospital for three hours after it.....flat on his back in a dark room.
Spinal didn't really provide any input for us though.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Diagnosed with MS WITHOUT a spinal!. My 2 neuros at the time sent me for MRI's instead...this after 3 years of my 1st symptoms. They didn't feel a spinal was necessary in order to diagnosis me.
MS like Lyme is a clinical diagnosis!
I was always thrilled I never had to go through a LP. I can't remember exactly, but I believe if you don't get a spinal within days of 1st symptoms it's really a useless test! Could that be why they excluded me for a LP; 3 yrs later? Remember, prior to CRABS, it took a long time (yrs) before neuros diagnosed MS! Back then, no doc was too quick to say MS...they waited for more "symptoms", and then lesions!
Hope you find your way: funny isn't it? I have a MS diagnosis(since 1990)and am now being treated for Lyme. hmmmmm
Posts: 158 | From PA | Registered: Oct 2006
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Didn't hurt too much, until the needle hit the nerve that goes to the bladder. I got a sharp pain in my abdomen and my bladder completely shut down. I spent the night in the hospital having my bladder drained by a nurse until it could function again. The associated back pain was horrible.
Won't do an LP again any time soon.
Posts: 1452 | Registered: Feb 2004
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Cobweb
Unregistered
posted
I personally refused an LP when it was suggested-by a duck. I already had a positive blood test for Lyme, and he treated me for three weeks, so when i still showed symptoms of lyme (after the three week course) he ordered an LP. No way Hosay. Without the LP though he would not continue Lyme treatment.
I did have an MRI,which was "normal" although it stated the results were compromised by "artifact motion" I was freezing during the test and shivering the whole time.
I finally made it to an LLMD who did not feel an LP was warranted (whew).Neither did my neurologist, although he was not a LLMD neurologist. Carol
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posted
Yes, LymeToo the poll was a success. I'm not getting the spinal tap. I called the neuro Monday to ask a few more questions about the procedure. He admitted about 50% of patients get the headache. I told him I was very busy at work and couldn't afford to loss "a few days", he said to do it in June when I'm on vacation. HOW CRITICAL CAN THE RESULTS BE IF I CAN WAIT TILL JUNE!!! Yeah right, June of two thousand and never. If all symptoms were pointing to MS then maybe. Thanks again to everyone, the information gathered at this sight is invaluable.
Posts: 69 | Registered: Jun 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Female, had the spinal before lyme diagnosis, to satisfy neuro, due to multiple brain lesions on MRI.
Got a violent headache despite doing exactly as prescribed (lying down, drinking tons of Coke, etc.)
Findings were elevated proteins and opening pressure.. lyme test negative.
Remember, even finding oligoclonal banding does not automatically mean MS as that can be found in lyme also. It simply adds to a diagnostic picture.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I had two spinal taps in the past four years and they are not fun.
I did get a headache after the procedure, but If you lie flat you will be ok.
I was 26 and 28 when I had these tests run.
Did they find anything? NO
It did rule out MS, but did not pick up the lyme disease in the fluid.
I really hated doing the test, but I did find some comfort in knowing that I did not have MS.
The docs originally gave me a MS diagnoses, so the results made them very confused.
Good luck.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
I was told 9 years ago that I have MS, and that a LP wasn't 100% useful - it only works part of the time to pick up MS. So I've never had one. Didn't seem worth the pain and the risk. Now I'm going through the lyme stuff and am positive on CD57, so I probably never had MS. Am still sorting out what to do about the MS drugs...
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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