Journey - Introduction
CIDP is Chronic Inflammatory Demyelinating Polyneuropathy, or for the longer version: Chronic Inflammatory Demyelinating Polyradiculoneuropathy (because it involves the nerve roots). The acute (shorter term) version is GBS - Guillain-Barré syndrome, which apparently is much more common. CIDP does seem to have other names as well, but I am trying to keep it simple (apart from the spelling)! CIDP can manifest itself in months/years and take even longer to recover from (if ever). There appears to be numerous effects of CIDP and yet so little appears to be known about how you get it and (from a catchee’s viewpoint) how you recover from it. Certainly books on CIDP/GBS exist, but they vary enormously in their examples and provided facts. This is my story, based on my experiences, my interpretation of events, voices my opinion on CIDP and how I am coping/coped with it.
One bone of contention is the medical professions obsession with pigeon-holing cases/patients and attempting to make the symptoms fit what they know! (e.g. GBS short term max. 4 weeks, therefore try and ensure the symptoms lasted no longer so it fits, when in this case they blatantly did not). Also as my symptoms were only confined to the legs, this again did not fit their pattern for known cases, so again it could not be CIDP.
Why am I writing this? Because the mystery/uncertainty shrouding this condition makes it difficult/impossible to understand and the medical descriptions scared me, much more than they helped. I read someone else’s account and it contained more useful information (in a readable form) than any other document, so as my experience has been significantly different to theirs; I decided to add to the knowledge, in the hope that someone else reading this in the future would gain a small insight into their condition and thus be better informed (oh and less scared!).
My simple motto: “Hope for the best, plan for the worst”. So if you know what you have contracted you have a chance for both of these.
One bone of contention is the medical professions obsession with pigeon-holing cases/patients and attempting to make the symptoms fit what they know! (e.g. GBS short term max. 4 weeks, therefore try and ensure the symptoms lasted no longer so it fits, when in this case they blatantly did not). Also as my symptoms were only confined to the legs, this again did not fit their pattern for known cases, so again it could not be CIDP.
Why am I writing this? Because the mystery/uncertainty shrouding this condition makes it difficult/impossible to understand and the medical descriptions scared me, much more than they helped. I read someone else’s account and it contained more useful information (in a readable form) than any other document, so as my experience has been significantly different to theirs; I decided to add to the knowledge, in the hope that someone else reading this in the future would gain a small insight into their condition and thus be better informed (oh and less scared!).
My simple motto: “Hope for the best, plan for the worst”. So if you know what you have contracted you have a chance for both of these.
Below are links to other pages in this section:
For those of you who are residents of the UK, then maybe the comments about the DWP & DVLA may prove useful to guard yourselves against their ineptitude. For those of you outside the UK - I hope your relevant government departments are not as bad!