Thanks…I think that you are right; there is a temptation to assume that all stems from the original issue.

I think, though, that when specialists aren’t 100% convinced of their diagnosis, i.e. when certain symptoms are not in the “usual presentation”, then they ask questions that lead down a certain path.

Alot of our discussions lately seem to have been of the “whether there is motor involvement”, due to my propioception problems, which I understand is not normally related to a small fibre neuropathy (of the dorsal root ganglion). These also lead on to questions about eating, digestion, etc. which might indicate autonomic problems.

While I am aware that some people have autonomic involvement with CIDP, I also know it is very unusual. The problem is, I usually end up in the “unusual” basket! :rolleyes:

We will keep moving forward!

Greetings Kazza

Sensory CIDP seems to be fairly insidious (sp)…I do reckon that there is a fair degree of inflammation involved. If the literal definition of CIDP is taken, your nerves are continually being demylinated and then trying to remylinate as inflammation levels rise and fall. I am taking ALA supplements and fish oil to try and reduce the amount of inflammation in my body.

I have no vibration sense in my toes, and only moderate on my ankle bone. My reflexes are absent. The altered sensation is in my hands, feet and legs up to my knees. My face and lips became involved about 6 months ago.

Things progress very slowly, and yet, as you say, you know when something has changed. I had a very bad year from pain and depression, and was pretty absent from life; lost 20kgs, all my muscle tone…but I am over it now. We did plasmapheresis, and that kind of turned the corner for me. We have had to go back to IVIg 2 days/month, and lots of meds, but we have restabilised.

Lately, I have been having trouble with stomach and bowel — and now my question for you and anyone else who might be able to help — what were the symptoms that made your neuro sit up and take notice with respect to autonomic involvement? What are the implications with respect to treatment?

Thanks alot and good to be back.
Debs

Thanks for any assistance