Nurses/Wise? Chronic inflammatory demyelinating polyneuropathy (CIDP)

[Jadis]

I was BSing with one of the docs that I work with and we ended up talking about my injuries. We have a lot of pts with peripheral neuropathy, etc that come in for foot care. The one I was talking to specializes in foot/ankle surgery as well as neuro disorders and their effect on the lower limbs and also does prosthetics.

After my accident in 2001, I started having problems walking to the point where I had to use a cane to get around. Prior to that, walking was painful and slow going, but I did it. The MRIs from 1999 and 2001 were compared and it was found that I had marked degeneration in my spine from the first accident. It was explained to me that I would be in a wheelchair by the time I was 45 judging by what was seen on the MRI. My birth mom (walking quad) also had this degeneration and so it was determined to be hereditary. Rather quickly after getting food poisoning in Aug 2004, I started having more problems with falling, maintaining balance, etc. The MRI in late 2004 showed marked changes in the nerve roots. I was told that since I developed colitis from the food poisoning, my body couldn't absorb B12 correctly, which was contributing to the nerves dying. In May of 2005, I was diagnosed with cauda equina syndrome. When asked about the nerve death thing, I can't get an answer with a name. All I get is, "well, you can see it right there on the MRIs, and the proof is in your nerve conduction studies." I have a feeling they don't know, and maybe I was misdiagnosed.

Well, the doc's reaction to what I told him was quite interesting. He said it sounds like CIDP to him. He also said that since it started after a bad case of food poisoning and the fact that I have autoimmune diseases (colitis, asthma, allergies, eczema) it fits. He seems to think that the car accident triggered it, then the food poisoning caused it to accelerate. He also stated that a lot of the people who have CIPD are misdiagnosed as having MS. He said when I originally started my externship at their practice, he thought I had MS--not a SCI. Up until last summer, sometimes I could walk unaided and you couldn't tell anything was wrong. I never knew when that would change as the next day, I may wake up and not be able to stand unassisted. (This was more prominent prior to the fall last summer that refractured T12 and caused a lost of sensation and function.)

He is the second person to mention CIPD. The other was a coworker of Boogs. He was talking to Boog at work one day about getting me out on the golf course and my level of function came up. He told Boog that with the exception of the thoracic spine fractures, Boog could very easily be describing his guy's wife. She went three years without a dx--seeing multiple docs here and on the west coast--then ended up going to a doc back east while visiting with her sister. She mentioned her frustration in passing to the doc during the sister's appt. He ended up doing an exam and he diagnosed her with it.

I've tried researching it and can't seem to find much information. Can you guys help me out? Sometimes I think that docs don't have an answer, and instead of saying "I don't know" they just guess and apply a diagnosis. I already think my doc is an idiot, and I've said as much here in the past. Now that I am working, I am hoping to be able to make the drive to the next town (121 miles) to find some quality care.

[Cripply]

http://www.emedicine.com/neuro/topic467.htm

[Wise Young]

Jadis, I don't have any personal condition with this condition. Wise.

[Jadis]

Thanks for the link Cripply. already read that one. was looking for others who may have it or maybe the nurses/Wise who have contact with those who have it.

thanks for reading, wise. Where would you suggest I go to find a doc who can tell me if this is what I have? Would I start with a neurologist?

[Wise Young]

Originally Posted by Jadis

Thanks for the link Cripply. already read that one. was looking for others who may have it or maybe the nurses/Wise who have contact with those who have it.

thanks for reading, wise. Where would you suggest I go to find a doc who can tell me if this is what I have? Would I start with a neurologist?

Jadis, sorry, I meant to write "experience with that condition".

CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) is presumably a form of Guillain-Barré syndrome (GBS), when the GBS continues for long periods with relapses. You would be best off going to see a neurologist, preferably in a large academic place such as Johns Hopkins, Mayo Clinic, or Penn.

Neuropathy is associated with many conditions, including infections, diabetes, genetic, chemotherapy, autoimmune, toxins, drugs, or simply unknown (idiopathic). CADP (Chronic Acquired Demyelinating Polyneuropathy) is the name that they give when there is a known cause such as diabetes. CIDP or CADP mix multiple related diseases that have been described.

GBS is sometimes called multiple sclerosis of the peripheral nervous system because it is really quite different in several respects. Most cases of GBS have acute onset and resolve. Recurrent cases with relapses are relatively rare. It is often associated with infections or other causes. Although GBS should not affect the CNS, occasional cases of CNS involvements associated with GBS have been detected.

I am very confused by all the classifications. This always happens when people have little idea of causes and mechanisms and are resorting to empirical descriptions of the conditions.

Wise.

[Jadis]

I am very confused by all the classifications. This always happens when people have little idea of causes and mechanisms and are resorting to empirical descriptions of the conditions.

I don't understand this statement. Is this in reference to what doc said? or what you found?

JSU sounds like my best bet since I hvae family out there that I can stay with. It's just frustrating. Since all this started, I bet I've seen a dozen docs, and all of them don't know what to tell me and refer me back to my current one since he's the SCI/pain mgmt specialist. I just got tired of dealing with it, so quit for a while. Since my symptoms are getting worse and I'm employed (altho no ins), I am starting the fight over again.