Bny,

I also have CIDP and had a spinal tap done. If the spinal fluid is high in protein it is a good indication that you have CIDP.

Call your docs and ask for one. Also ask for IVIG.

Don’t wait, call the office and leave a message for docs saying you want this done.

Rhonda

After my spinal tap, I was forced to lay on my back for about an hour and then was told to take it easy for the rest of the day. They gave me coffee and juice. I walked out of Baylor Hospital without problems and had very little headache afterward. The next day I got on an airplane bound for China—not on vacation but for my job. I had no problems related to the procedure while I was there for three weeks.

Spinal tap is one of the first things they do to test for CIDP. If the protein count is not 100 or better you probably do not have CIDP.

Mark,

Did you have a spinal tap done? They will be looking for elevated protein levels. I would call the neuro office and ask for one.

Rhonda from Canada

It does sound to me like you do have CIDP, based on the numbness & tingling of both your hands & feet, loss of reflexes & lack of sensation. Also, CIDP tends to be a symmetrical illness, what happens on one side of the body happens almost the same to the other. You must have a spinal tap/lumbar puncture to see if your protein level is elevated; I had 3, they’re not that bad. I also had a sural nerve biopsy & also a surgery on my back to remove 2 nerve roots (I believe that this one was as a guinea pig for Mayo’s research.)
My neuro at the Uof MN later told me he could have dx CIDP with the spinal tap & an EMG, won’t tell you all of the testing Mayo did, my bill was over $200,000 bu the time I got done. But don’t put any of this off, it was just weeks before I had the numbness & tingling to ending up in a powerchair unable to do anything. I had a severe case, but do not take this illness lightly, as it can progress very slowly or rather quickly. Stay with us, read, learn & keep us posted…

Linda, Thanks for the update. Know that I will be praying for you as well. I’m encouraged that you have direction. My spinal tap confirmed my CIDP DX (and wasn’t any big deal for me). I will pray the same for you. I will also pray for your heart and thyroid, correct diagnosis, treatment, sleep, peace and strength.

Hang in there. Gary

All smiles, I have had two spinal taps and both went well with no problems with fluid obtained right away and no problems afterward. I just wanted to let you know that it can go smoothly and well. I asked two of my friends to come to the first time because I was nervous and one kept me laughing most of the time and helped a lot for me not to be nervous. She is also a nurse practitioner and has done thousands of spinal taps and said she would be glad to step in to do it if there were problems or the resident didn’t know what she was doing (or started having contractions at that time since the resident looked nine months pregnant at that time!) If possible have someone go with you that is really supportive to you. Drink plenty of fluids the night before. Curl up into a ball as much as possible. This opens up the spaces between the backbones so that it is a lot easier. Lie flat for at least one hour after the spinal tap before getting up. Drink lots of water afterward and like other said try to lie flat as much as possible for several hours. A lot of the time it helps to drink caffeinated drinks–like sodas to help prevent a headache. We even give some of the teens IV caffeine after spinal taps (for chemotherapy) to help prevent headaches in the Pediatric Cancer clinic where I work. Consider taking ibuprofen or Aleve after the spinal tap if a headache starts. Take it with you to take before the headache gets bad. It might be better not to take before the spinal tap. Gently ask if they are sure about all the tests that they might want to do on the spinal fluid. As a teacher, I tell people the the most important parts of doing a spinal tap are having everything ready, having a long enough needle, and having the patient in the best possible position.

the other test you may be having (“EMG for the brain and spinal cord”) might be somatosensory evoked potentials. I had that done and it is a little uncomfortable because, like the EMG, it has little shocks to make the nerves react. To deal with this, think about that it will not last for long and keep thinking that this hopefully will give answers. I kept repeating to myself–I hope this gives answers and this helped me get through nervousness and times of discomfort with all the testing. I also thought about things important in my life that I wanted to get back to doing (not as sadness, but as a reason to put up with the tests with hope to get the best possible answers).
I hope all goes well for you and that you have peace. I would guess from your name that you are a positive and caring person. Use this as the strength it is.
WithHope

All Smiles,
I wish you well. Good Luck. Now I will be honest with you, I did not have a good experience with my spinal tap, but I was an absolute basket case because it was done on the day I went paralyzed & I was scared to death.
I was having a hard time relaxing so if I can giveyou any advice it would be try really really hard to relax :rolleyes: and of course what TJRPT6 said drink alot of fluids.:)
Hang in there & keep us informed.

All Smiles,

You’ll be OK with the LP. Just drink alot of fluids along the way. just not so much your going every 10 minutes. If helps replenish the spinal fluid. I went in on short notice and didn’t drink much so they made me sit through a bag of IV before I was cut loose. I had mine on Christmas eve. 🙁

All you feel is a little pressure. they will numb you up locally. The sooner the tests are done the sooner you’ll know where you stand. Good Luck

Don’t be afraid of the spinal tap. Mine took about 15 minutes from the time I went into the hospital room until it was done. They put a bit of freezing in the spot, then insert a small needle, you should not feel anything. My neorologist prefers a “dull” type needle instead of a sharp pointed type so he can feel when it goes through the membrane to prevent nerve damage. I left the hospital 15 minutes later with no side-effects at all. The results took 2 days.

I hope this helps

Paul

[SIZE=2]When they did my spinal tap it took them like 45 minutes to do. The doctor was new and I don’t think she had done very many so I think that is why it took so long. I was super nervous about it so they gave me a shot to clam me down in my IV and then they also gave me a few shots on my lower back so I would not feel the needle. I’m a major chicken when it comes to shots so they did everything they could to claim me down. If she is sacred just let them know and they will work with her. I do not think they should take as long as mine did, it was just because I had a new doctor. Just have her lay down afterwards so that she will not get a headache. They are looking for higher then normal protein level. The blood work is just to help see what is going on and help them rule out factors that maybe causing her to be ill. They want to be certain as to what is making her sick. You both will be in my thoughts!!!
[/SIZE]

my protein level was 20 on the first spinal tap (i was mostly paralyzed, double vision, impaired speech, etc.), two days later they did another spinal tap and it shot up to 80 and so on. just because early spinal taps are normal, does not rule out gbs as mentioned by everyone above. listen to everyone on the previous posts and don’t let the doctors down play this in any way. some of them, tend to do that. it took three opinions for me to find the right doc. your family is in my prayers.
deb

I’ve always had to lay flat after my spinal taps– for the first one, about eleven years ago, it was 48 hours. Now it’s down to 24 hours, because they’ve gotten much more accurate– the neurologists no longer do the spinal taps here, instead it’s the [I]radiologists![/I] That was a quite a hurdle to accept the first time I had it the “new” way, but what they explained to me it makes sense– at the hospital where I get mine, the radiologists *watch* the needle going in and where it is relative to your spine on a machine that’s like real-time x-ray moving picture– I watched it on the monitor myself, and they really [U]can[/U] see exactly where the needle is.

They said since they started doing the procedure this way there is even less of a chance of the dreaded spinal headache.

NOTHING scares me, and I’m so terrified of getting a spinal headache that I follow all the recommendations to a T– I get someone to drive me home (and I lie as flat as possible in the car) then other than getting up (ever so gingerly!) to pee, I’m flat on my back for the prescribed time. I also drink lots of water.

[SIZE=”4″]Good luck to you! [/SIZE] When I have it done they find protein, and once or twice they tried to find Lyme (but didn’t.)

Hi Mike,
My spinal tap (1999) was what diagnosed me. I don’t remember whether I had a local, but I do know it didn’t hurt me at all. I was told to lay flat for several hours to avoid a headache (didn’t get one) and I remember they wanted me to eat, try eating when you know you must lay flat on your back.
We’re coming back now, we’re here to help.
Liz