Sadly, it is my opinion, based on my recall of literature reviewed, that a Lumbar Puncture, by itself, is rarely definitive.

It is only when all the appropriate tests are taken into consideration, along with your personal clinical presentation, that an experienced neuromuscular specialist will help you rule in and rule out any particular disorder.

Maybe.

In my case, for example, my two lumbar puncture test results were unremarkable. And, there are several things they can test for with one puncture sample of fluid.

I read then re-read again and again on all these tests—here ,other (less knowledgable sites) different hospitals/doctors opinions etc before heading to mayo for my second opinion. I know there are many who will disagree– but i went to Mayo with the thought that i would do any test offered or available that would help find a treatment for this disease. It is so rare anyway. then take into account everyone who has it has different symptoms,responses etc. It was a tiring week and i did not enjoy it at all—but in the end I am glad I endured it and went through with every test available for cidp. I do not mean to influence your decision at all—but sometimes even having a test that comes back negative can rule things out and bring you a step closer to finding appropriate treatment. for those that have correct diagnosis and are receiving treatment thats effective this isnt such a concern—but if what your currently doing isnt working then keep searching,testing asking etc until it is—-this is the phase i am currently in too. : ) Lori

My neuro told me that I have atypical CIDP also. I transfered to a CIDP specialist at the U of MN after initially being diagnosed and treated by a different neuro. I transfered because I thought being in the care of a neuro who specializes in CIPD might be better than just a plain neuro. Anyway, the specialist said that if he was first seeing me and I did not have all the lab reports to back up my diagnosis he would not diagnose me with CIDP. But all the lab reports say I do have CIDP. I have the elevated spinal protein and abnormal EMG. But I don’t have anything abnormal on my neuro clinical exam. I have no weakness or loss of sensory sensation or reflex. Mostly I have tingling in my feet and hands that comes and goes (worse at night when I finally get off my feet). I also have some pain and aches in my calves and fore arms and a vibrating or shaky feeling at times. I have been getting 40 grams of IVIG every three weeks now for about 4 months. I do see improvement after I get the IVIG. I almost feel normal after IVIG and start to think maybe I will be able to put this behind me this time. But then around the 19 or 20th day I start to feel the tingling and mild weekeness in my knees again so I know the disease is still active and i need more IVIG. But I don’t seem to be progressing to anything worse than what I have right now and hope I stay that way. It is depressing to think I will need IVIG for the rest of my life to feel somewhat normal but if this is the worst I get I can live with it. Weird thing is I feel worse after drinking my coffee in the morning. It must be the caffine. I am also very anxious since being diagnosed so i think sometime the anxiety of this disease for me is causing a lot of my symptoms or at least agravating my symptoms. My opinion is I would get the Lumbar Puncture so that you can put your fears and anxiety to rest. If you don’t get the lumbar puncture you will never know if it would have given you a diagnosis. Just my opinion. Good Luck.

Honestly, I think you can handle it awake. I think I posted to you before about how my then 5 year old went through it wide awake. My sister (who is the BIGGEST chicken when it comes to needles) had it done & handled it amazingly well! It really is NOT a big deal at all. I honestly don’t know if they will sedate you for it.

I think a lumbar puncture is one of the must needed tests to diagnose CIDP (and many other illnesses). I would question any dr who wouldn’t order one.

I Googled it & this link came up:

[url]http://www.nlm.nih.gov/medlineplus/ency/article/003428.htm[/url]

Read through it & it should answer all of your questions.

Kelly

They probably won’t put you to sleep for it.

I had it done and I was so scared…I got myself all worked up and it was pretty much painfree. All that worry for nothing!

My doctor put some numbing gel where the needle was going to go in, I didn’t feel it. I did feel a slight pressure for a very short time.

You can ask for a pill to help relax you before they start if that will help.

Good luck,

Rhonda from Canada

Kevie has had 4, not to mention the numerous sticks by residents. My advice would be to ask for a valium or your docs drug of choice, demand that a student/res. not do it. If at all possible, ask for an aneasthesiologist (spelling) to do it. Don’t let them do more than 2 sticks, if they do more, the sample has a good possibility of being ruined because blood gerets in the sample. Be SURE to STAY flat on your back for as long as they will let you and as soon as you get home, lay flat on your back for the remainder of the day if possible. It will help with headaches. A spinal is a good way to firm up a dx. Some people however do not have a elevated protein. If that should be you, do not let the doc stop there. a ncv/emg, clinical presentation and if needed muscle or nerve biopsies could be tools too. Good luck. My 10y/o at the time of dx was unable to walk, urinate, hold a pecil, cup, breathe. today he is 13 and can run, ride a bike etc. w/ivig keeping him going. Keep the faith and don’t give up.
Dawn Kevies mom

I have had three LP’s and hubby has had one. Mine were to diagnose MS and his to diagnose CIDP. Hubby is not a stoic and does tend to faint with medical things (sees stiches being removed and kerplop there he goes ). He was just fine. No pain–only feeling of pressure. I will second what others have said. No med. students or junior residents, make sure you stay flat for as long as possible after (lay on the back seat of the car when going home if possible and then go to bed and stay put for a few hours). I made the mistake on one of mine of going out to lunch after. I had almost intolerable headache as a result and was out of commission for days–should have gone in for a patch in hindsight. It is a very useful tool indiagnosing CIDP. You shouldn’t need to anesthetized and it’s very unlikely they would agree to that–a little Ativan should be enough to relax you. Good luck and let us know how it went.
Laurel

😮 I had mine done with no problems, and it was performed by a first timer (of course), but she did just fine with the guidance of her assistant… For me it was not a big deal, and actually it was a relief, because my diagnosis was not confirmed until that test was performed.. I was in so much pain, and nerve damage I hardly felt it… The rest was history….. Within a short time, they diagnosed gbs, and treatment began…

J.

My lumbar puncture was totally uneventful. Follow Dawn’s post procedure advice. I brought my mp3 player and listened to some tunes during the procedure.

My LP showed elevated protein and confirmed the CIDP diagnosis, but know that the results may be inconclusive and frequently are.

Prayin’ that you will get conclusive diagnosis and treatment,

Gary

[QUOTE=GaryO Houston]J.

My lumbar puncture was totally uneventful. Follow Dawn’s post procedure advice. I brought my mp3 player and listened to some tunes during the procedure.

My LP showed elevated protein and confirmed the CIDP diagnosis, but know that the results may be inconclusive and frequently are.

Prayin’ that you will get conclusive diagnosis and treatment,

Gary[/QUOTE]
hi Gary

When you say inconclusive what do you mean exactly, if I may ask.

In your case it was quite conclusive, I take it.

So what can an LP show which isnt normal but at the same time isnt conclusive ?

I havent had LP yet.

Thanks

John

I don’t want to speak for Gary, but my reading has told me that there are times when an LP comes back “normal”, but that doesn’t necessarily mean that you don’t have [fill-in-the-blank].

I had one in ’01, for example, and it was “normal”. I have not had one yet, since my CIDP-like symptoms have presented themselves, but am going to attempt to convince my neuro to schedule one. I have an appt in late February. Looking for the elevated proteins is an important step in this process, I think.

Having had an LP, and being a typical, male coward, I have to say…”I survived”. :p It wasn’t as bad as I expected; minimal discomfort. Felt a little light headed during one part of it, but that was a result of my own anxiety. I would suggest, if you’re really worried about it, not to get a “general” anesthesia, but simply ask for some Xanax a half-hour before the test. Shouldn’t affect the results at all, and will help with the anxiety.

For me, honestly, the worst part was having to lay on that damn table for an hour and a half after the test. You have to lie still so that the spinal cord can heal up the hole they make. Even that, though, wasn’t horrible.

Good luck!

Elmo

regarding “inconclusive” That is what I was refering to that some people DO come back with a normal protein count. It could mean that in fact it is not cidp or if clinical observations are indicative with cidp and a lp is NORMAL, it would just mean you would have to do further testing to positively dx cidp. Such as ncv/emg, posibly a nerve or skin biopsy to show episodes of past demylienations. More than likely if cidp is suspected the lp will come back elevated, so don’t get to nervous, it is just back up info should you need it.
Dawn Kevies mom

Sometimes, IF you are lucky enuf to get an LP from the get go? And it shows nothing? The same goes for EMG’s and NCV’s as well. Testing a few months [6-12 months] later on can actually show a conclusive change. Tho I’d not had the LP at first? My nerve conduction tests went DOWHILL. To be confirmed by further bloodwork and LP.
As for fearing it? WEB IT UP! Doc’s instructions were only for prep and not for the follow-up. Good thing I’d webbed it up! I knew what to expect and what not to. And, what problems could occur and when to call the doc’s office if something went off during the following day or so. It’s not a matter of fearing it? More a matter of learning what is going to happen to you, why and if any little thing goes wrong? How to ask about what mite be wrong. Knowing is power over fear. And this IS an invasive procedure. But if you go in wise, and ask hard questions? Well, you are gonna get better results w/far less stress than otherwise.
Granted tho? It does feel at times as if someone’s thwocked you in your back! So go lie down and just sleep it all off!
Hope this helps. And ‘good’ results? Not that I wish this on anyone, but just enuf ‘results’ to get YOU somewhere!

When I had it done, it was a snap and it nailed down that I had CIDP. They gave me something before hand that left me rather “relaxed”. I wouldn’t worry about the procedure too much.

J.

You are correct. The LP test looks for an elevation of a particular protein that indicates demylenation. My neurologist cautioned me (and I’ve read many posts that confirm the caution) that even if a patient has CIDP the proteins are not always elevated to the level that confirms CIDP. For some the second or third LP does show elevated protein levels. My LP showed the elevated protein on the first LP.

I was quite apprehensive about my LP. I was given a local anesthetic. I could feel the technician working on my lower back, but never felt the needle. I carefully followed their post procedure recommendations and I had no after effects.

The LP just another diagnostic test in the docs tool box to help diagnose this insidious disease; EMG, NCV, nerve biopsy are some of the other tools. I have not had the nerve biposy (thanks be to God). From what I’ve read of other’s experiences with the nerve biopsy, I consider it a last resort. If your neuro recommends a nerve biopsy, please do your research to educate yourself on both the procedure and the possible after effects.

Again, know that I’m praying for you,

Gary

Jim, Welcome back … I sure have missed you and your phunny photos… Gary

Mine was done with local anesthetics and was done with relative ease. It is a necessary part of your diagnosis. Good Luck

A ‘Lumbar Puncture’ until it was all done? The fluid was taken from me at the doc’s offices and THEN I went to a local hospital where I had blood labs taken to boot! I wasn’t aware of the possible s/e’s UNTIL I found out what truly had actually been done? Luckily common sense prevailed and I went home and reclined or bed napped for the better part of two days. I did feel tho at times? As if I’d fallen and hit my back on a stair or the like… Went away in a week tho. But was a slitely grumpy camper for the interim.
The clearer you can perceive what is being done to you? The better prepared YOU can be for being ‘done on’! Ultimately? Less stress and discomfort for all all around. Never be shy about asking the why’s what’s this gonna do for me and what problems can occur?!!!!!!! And , spinals aren’t overall fun Tho lots easier than some other tests for sure! And truly some immune issues in blood and spinal work don’t show up in the ‘desirable’ numbers rite away!
Knowing/learning as much about diagnosis is key to understanding what procedures-or hoops you mite have to stumble over in the diagnosis process!
My heart is with you in this process, it’s not ‘fun’? But, it IS necessary!
Hang in there all will be sorted out eventually! Just listen to those ‘inner voices’ and don’t ever give up!

Hi J.,
I have to give the truth on some things. Many people here know me, and I give the best advice I can. I am dieing from the complications of CIDP as the various treatments failed me. And have been through ALL the tests prior to diagnosis, and ALL the protocol of treatments, so I can comment on most anything here.
I’ve had about 4 or 5 LP’s.
But I must comment here, that I do NOT trust a doctor to do it,
unless it is done in IR (Interventional Radiology).
I had a HORRIBLE experience with my first LP, about 9 or 10 years ago.
First, I was scared to death to have one–when I was a child about 11 or 12 years old, I was in the hospital for a kidney infection. This was back when they had all pediatric patients in one large room. There was a girl in the bed next to me that I got to know, about my same age. One day they took her for, (what I know now), an LP. It was done down the hall in one of the examination rooms. I could hear her screams and cries coming from the room!!! I went down to see what they could be doing to her, and they had left the door open, and I watched them stick the HUGE needle into her back.
She screamed for at least an hour.
I remembered this, when I was told I was going to get an LP. I told this to the neuro, and told her I was PETRIFIED and very nervous about getting it, and told her about when I was a child, watching it and hearing the screams.
She told me there was nothing to worry about, and brought me to the room where it was to be done. She had someone assisting her, that I later found out that the hospital I was in, was a teaching hospital.
She did the numbing of the area first.
Then…here goes…
She kept missing the spot where to go into the spine. Everytime she would miss, a leg or both legs would jump, or an arm would move, as she was hitting different nerves in my back. It was as if this was her first LP and she didn’t know what she was doing. FINALLY, AFTER THE SIXTH TIME OF GOING IN, AND BY THIS TIME, YES IT WAS HURTING, she got the damn needle in the right spot, and got the spinal fluid out. (By the way, you are lying on a bench bed, in a fetal position, so they can get at your spine.) So, they had me lie down flat. Suddenly, I yelled out to her, something was wrong! All of a sudden, my legs started shaking, then my whole body was shaking and my eyes rolled back in my head. She yelled to the assistant to call a CODE BLUE, since she didn’t know what was going on, and of course, I CERTAINLY didn’t know what was going on. The tiny room filled with doctors. My lifepartner and a close friend were outside in the waiting area, and heard the “Code Blue Neurology” and saw the doctors running. They were starting to panic, since they knew I was in there.
After about 10 minutes, the whole body shaking subsided. They rolled me out and down to the ICU quickly, right past my waiting partner and friend, to the elevator. They decided it was some type of seizure from either her poking different areas, or the high anxiety of having it done. They hooked me up to machines and gave me sedatives. They watched me through the night and I left the next day. Because of all the shaking with my head, I had MASSIVE headaches. They gave me Dilaudid for the pain, thank you very much.
—
Needless to say, I NEVER went back to that hospital, that doctor, and even switched health care groups, (my health insurance is done in groups of doctors).
I did find a good GP, and a new neuro. About a year later, they wanted to do another LP. I said either you put me out, or find another way of NOT letting a doctor do it.
Well, it turns out there IS a way that it CAN be done, that I think ALL LP’s should be done this way. I happened to be a patient in the hospital at that point, due to the CIDP, and they told me where it can be done in Interventional Radiology. They use an on-going x-ray, to know EXACTLY where the needle is supposed to go in. And the needle in hooked to a machine, so that it goes straight in, gets the liquid, and quickly out.
So, I laid down on the table, flat on my belly. He injected a local anesthetic,
(I couldn’t see what was going on, since my face was down in the pillow).
A few minutes later, I said to them, so when are you going to start.
They replied–“IT’S ALL OVER!”…WOW–I didn’t feel a thing. One-two-and it was over.
—
So, when I am asked to get another LP, I will ONLY get one if they have Interventional Radiology do it. If a doctor tells me no, that he would do it, I then DECLINE getting the LP. Do it the way it should be–to me, it should ALWAYS be done by IR, and NOT by a human/doctor doing it.
—
Sorry-I had to give you a “con” note here, but see it you can get yours done with IR.
Ken
(KEDASO)

Mine was done in the Dr.s office. I went in for my regular appointment. He suggested that I stay a little longer and he would do it during his lunch break. I rolled over, he slid the needle in, took the fluid he needed, and in about an hour I was on my way.

No fuss, no muss, no hassle.

If your Doc is competent. There should be no problem. Just a little novacaine, just like stitches. It was really a simple procedure.

I hope you get some answers.

Dick S

I had a LP and it also did confirm CIDP, had no problem except I did get up to soon and got a massive headache. Don’t get up too soon.
lynette

Yeap it was so easy that i thought about seeing if i could get paid at a medical school where the students could practice on me as they have to eventually learn how to do the procedure on someone. Also no headache or anything as i drove my truck home from the hospital after about 45 mins the procedure 🙂

Glad to hear things went well. Keep us posted on the results and don’t forget to take it easy and lay as long as possible!
Dawn

[QUOTE=J.Dennison]Well, I just wanted to let everyone know that I had my lumbar puncture done today, and did indeed survive it. I am in bed resting now. Thank you all for your thoughts, and advice…..I am relieved that this week of testing is over. A fourth EMG, 2 MRI’s, Lumbar Puncture, 2 blood gas tests,and 2 ER visits is enough for me![/QUOTE]

That’s great !! and i concur with what Dawn Kevies Mom stated 🙂

hi

I finally had an LP, which done perfectly. I did not even know the needle was in and no after effects at all.

I had the consultant do it for money so maybe that helped!

Dont know the result but have a $10 bet with the consultant that they will find something. He thinks not. I should have bet him a few 100,000:)

dear julitta,

glad it went smoothly!

alice:)