Hi
Has anyone on here had the spinal tap done. I have heard it was bad then I have heard it was not so bad. I want to know because I think he is going to ask me to get it done because he mentioned it the last time I was in his office. He said some people with fibro has abnormal levels of substance p(protein) in their spinal fluid. Has anyone had this done and did they find protein in your fluid?
I have had protein found in my urine many,many times. He said that was a sign also among a lot of other symptoms I been having. How do you read the tests if they do find P in your spinal fluid? This is really worry me because I don't know what to think. I don't want to be left paralysis or something. :(
P.S.
I told him I wanted some kind of objective proof he said that there is no test to show for sure that I had fibro. That stinks because you know so many people has there doubts about it anyway and that makes it worse. I wish they would find a test to prove this
painful disorder so a lot of people would take us seriously and know this is a real painful disorder. Oh god help us all.

hi trup,
i have had 2 spinal taps, years ago. it does hurt. i won't lie about that. they were checking for meningitis. if you do elect to do this procedure, follow their instructions to the letter. i had a hard time the first time. had to urinate and could not do it in the pan in bed. like a dope i got up. spinal fluid has a delicate balance and requires 24 hours to replace what was taken. till then if you stand up you get a horrid, and i mean horrid headache. second time i wet the bed and played baby. no headache.
i would not do it again. most especially not for a maybe. just because there is no difinitive test for fibro does not mean it is not very real. it is. one day there will be a test. till then worry not what others may think. their thoughts belong to themselves not you.
peace,
bluelakelady

There is no definitive test for fibro.

But an LP for fibro? That seems like overkill to me and completely unnecessary. If I were you I'd decline and find another doctor. In the complete absence of other symptoms protein in the spinal fluid means absolutely nothing.

I have been reading this board for awhile now, I started just after I was diagnosed. I have not posted yet but I felt I needed to respond to you. I had one a few months ago while they were still testing for lyme disease. It does hurt alot, they had to try several different times before they could get the tap it was awful! The post above about the headaches is soooo true. I had to lie in bed in complete darkness for 3 days only getting up to go to the bathroom. The headaches are horrible! If it wasn't for testing for lyme I never would have chosen to do it.

I did not have a spinal tap but I did have a bone marrow biopsy done, and everything came out normal. I would not reccomnd it, it was the most painful thing I have ever endured.

Vic

I had a spinal tap done when they were trying to figure out what was wrong with me -- I think they were testing for MS at the time.

It's not the most pleasant feeling in the world to have a spinal tap -- but if a pregnant woman can stand having a needle put into her spine - I figure we can all do it (without contractions! ;-) I know it's not the same - but I try to look on the bright side!

Yes.. deffinately follow doctor orders for after if you want to avoid a headache or any other complications.

Good luck!

Hi ctheri
I had a mri on the brain which showed everything o.k. and also a complete blood count done and so the doctor felt he could rule out ms at this point among a lot of other test. If I listed them all it would take a long time but I'm sure we all know about tests on this forum. Anyway I'm glad I'm learning some about the spinal tap if I decide to go through with it. Thanks for your advice and for the luck.

Hello Vic77
I have heard about the bone marrow biopsy they are a lot worse then the spinal tap. I saw it also being done on tv. OUCH!!! I'm sorry you had to go through that but I'm glad they didn't find anything bad like cancer. Take care.


I have to go right now. I will reply to everybody else later. Bye for now.:wave:

Hey fibrofoggie
Thanks for your input. I don't know what I'm going to do yet but if I have it done I will brace myself for the bad headache to come. I hope if I decide that they get the fluid the first time.

Hello grapedy
That was the first time I ever saw this rheumatolgist. My regular doctor recommended him to me. I understand what your saying but I think so far he seems like a good doctor at least he ask me a bunch of questions about my family and me. Almost all the other doctors I have been to just say try these pills if that doesn't help come back and see me and rushes out of the office. Or even worst they don't even know or believe in Fibro. He said that some people with Fibro can have abnormal levels of substance P(protein) in the spinal fluid. But not everyone so that test is not a sure thing. So I think I will probably decline it if he mentions it again.Thanks for your advice.

Hello,
I did have a Spinal Tap done a few years ago in order to rule out MS. The tap procedure itself really did not hurt...just a little uncomfortable...I could feel mostly pressure. However, my physician was awsome and got the fluid needed on the 1st try. Let me tell you though, pay attention to the post procedure advice! I did not and did end up with a spinal headache. It was the worst....I will NEVER forget it! Then I found myself at the hospital having a "Blood Patch" done (this was more uncomfortable than the tap itself...much more!)