CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

My first spinal tap about 8 yrs ago showed that my protein level was 4x the normal amt.
Next one about 2 yrs later still showed elevated protein but only twice the normal amt.
I’ve been diagnosed with CIDP and tried IVIG infusions every 3 rd week for 2 days but I felt nothing different after 8 mos of infusions,so I stopped them.

Does pain from a spinal tap last long? How long does that procedure take?

Could the infusions be the reason for the protein reduction?

My only experience with having a spinal tap was 20 years ago. It was uncomfortable but only took a few minutes so was easy to tolerate. I did have a major side effect which was a migraine from hell. This migraine lasted 3 days and was only relieved by another procedure at the hospital called a blood patch. Apparently there was a small leak of spinal fluid which caused horrible pain. I’ve heard that you must lay very still after a spinal tap for several hours to avoid this adverse reaction. The hospital got me up 20 minutes after the procedure.

thank you Terri.

If it will garner information and help with dx, I will have to be prepared. She said she would do one, then delayed. It’s time for something…

I didn’t have much pain during the spinal tap.
They give you some mild anesthetic like lidocaine before they retrieve the spinal fluid.
The worst part is in the positioning, either you sit up and bend over something like a table, or you lie on your side.
Procedure itself lasted maybe 20 min
If they get in the space quickly, and they get the fluid quickly,the procedure is done.
After a spinal you do need to lie flat for awhile to prevent having a spinal headache.
I was lucky in that I was fine after the tap.
I had the spinal tap before the IVIG infusions even started..

I’ve recently been diagnosed with CIDP through nerve conduction tests, EMG and lumbar puncture. The lumbar puncture demonstrated high normal levels of protein. Is this consistent with CIDP. Symptoms began in 10/23. Thank you

Welcome @kirbyukat, I have small fiber PN but haven't had the lumbar puncture but I did find this information that might provide some answers.

"Approximately 90 % of patients with CIDP demonstrate elevated CSF protein (greater than 45 mg/dL) (62-64). CSF pleocytosis is not typically seen, and often suggests a co-infection, such as HIV (65)."
--- Chronic Inflammatory Demyelinating Polyradiculoneuropathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4845954/

Have you started any treatments?

That is a question for a good neurologist to answer. He would have to rule out that you didn’t have one of several other diseases like lupus, MS, etc before a final diagnosis through blood tests an also check for small cell neuropathy or fine nerve in your skin issue with biopsies, you need a professional. Bottom line is you have Autoimmune disease disease and you have come down with one of the 15 or so diseases that come with to about 15 million American l believe probably because of genetic tinkering in human vaccinations.

Neurologist diagnosed me. MS test was negative. Relocating to St Augustine in 2 months and attempted to get in with Mayo Jacksonville without success. Difficult finding a neurologist with a true knowledge of this disorder.

You are right, they don’t know much more than we do yet, that is why l joined this site. I do my icing infusion every month, it helps , we see where we go.