What is the root of the CIDP/GBS problem?

My diagnoses:

Chronic Inflammatory Demyelinating Polyradiculoneuropathy

But I always see:

Chronic Inflammatory Demyelinating Polyneuropathy

The "radiculo" refers to root. My understanding of anatomy is that the "root" is the junction between the spine's lower neuron connection nerve sheath and the anterior horn of the spinal column.

Peripheral neropathies and organ dysfunction, could they be caused by destruction of the primary nerve roots coming out of the spine? Or, are the nerve roots referred to the nerve/muscle junction of the proximal and distal nerve nodes(roots?) on our limbs?

I am a bit confused because my neropahties are very symmetrical (almost an exact duplication of dysfunction on both sides of my body, i.e., arms, legs and fingers). How is this symmetry possible if the distal nerve nodes (roots) are so far apart?

The spinal root connection feeds action-potentials to entire limbs. If portions of our multi-axion roots is demylinated, then would only specific section of a limb be be impaired? I'm having a big problem understanding the symmetry of cell destruction, unless the demyelinating dysfunction takes place only at the spinal root.

I think it is just a name and unless there have been some very specific identifying tests then you are probably captured by that "what the doc" knows syndrome. That is what the doc knows so that is what it gets called.

This could be quite a deep questiion. There is much yet to be learned about cidp. One thought came to me after meeting my neurologist yesterday - since my twenties I have had long periods of crippling and symmetric lower-back pain. I wonder of other CIDP sufferers have a history of disabling and symmetric lower-back pain ?? Maybe CIDP is partly due to nerve-damage 'upstream' of (I think the right expression might be 'proximal to' ) the spinal column. , rather than wholly due to some breakdown of the 'signal-processing' capability of the nerves. Just a thought ...

I am also confused with my diagnosis. I have had chronic lower back pain for many years and after the first mri I had I was told that the nerve root in the spine was affected and would probably turn out yo be CIDP. At this point I had no idea what CIDP was. I then had lumber puncture and nerve conduction tests, eventually I was diagnosed. However when I seen my neuro last time he said that my back pain was probably due to wear and tear as CIDP affects hands, feet etc. my main pain is in lower back and is why I had the tests in the first place. Since diagnosis I have developed weakness in legs and arms, numbness and tingling in hands and feet, severe stabbing pains and flu-like symptoms. I also get very fatigued especially if I am stressed or do too much. I have now had to finish work after 29 yrs and raising four children as I just can’t keep up. I am currently having no treatment as apparently I am not bad enough! I have also had trigeminal neuralgia for 6 yrs and have recently had a second ablation which has left me in worse pain than I had originally. So confused, just don’t think the docs explain things well enough and feel a bit abandoned. I would be interested to hear from anyone who can shed some light on this disease, hope you get some answers soon x

Unfortunately there is no easy simple answer right now. CIDP and GBS are really quite generic names for quite a few related conditions (and you might have unrelated conditions interfering). They do know some of the precipitating events (like surgery and some infections) but the pathogenesis (what is actually happening to cause things to go wrong) and the etiology (the manner of the cause) are generally still quite a mystery.
The docs (even the specialists) really just give you their best guess - and NOTE - I say THEIR best guess - and that is because even the best of them can not keep up with every development of every rare condition.

The absolute best bet for anyone who wants to know the latest about their condition is to do their own research. That is NOT doing a Google search (usually). Use Google Scholar link here but expect to be frustrated as many of the articles you find on your condition will be "pay to view". And - keep a very open mind to track down obscure information and find new words to search on. This is very time consuming (and record your finds) but eventually you might get to know your condition far better than any of your docs - but don't tell then that!!! If they are receptive you can give then a hint.... "I found somewhere that xxxxx - what do you know about that?"

Good luck.

tech42 said:

I am also confused with my diagnosis. I have had chronic lower back pain for many years and after the first mri I had I was told that the nerve root in the spine was affected and would probably turn out yo be CIDP. At this point I had no idea what CIDP was. I then had lumber puncture and nerve conduction tests, eventually I was diagnosed. However when I seen my neuro last time he said that my back pain was probably due to wear and tear as CIDP affects hands, feet etc. my main pain is in lower back and is why I had the tests in the first place. Since diagnosis I have developed weakness in legs and arms, numbness and tingling in hands and feet, severe stabbing pains and flu-like symptoms. I also get very fatigued especially if I am stressed or do too much. I have now had to finish work after 29 yrs and raising four children as I just can't keep up. I am currently having no treatment as apparently I am not bad enough! I have also had trigeminal neuralgia for 6 yrs and have recently had a second ablation which has left me in worse pain than I had originally. So confused, just don't think the docs explain things well enough and feel a bit abandoned. I would be interested to hear from anyone who can shed some light on this disease, hope you get some answers soon x