My Survey Conclusions
As I am not a medical person and the sole "experience" of GBS/CIDP is based on what has happened to me. What I conclude below is based purely on how people have responded to my survey and the feedback I have been given to the results:
My actual concern with the people who filled the survey in; are potentially these still have issues therefore some of the answers and findings are swayed, but as they were kind enough to fill in the details all I can do is present and comment on the results/answers I have.
The final conclusion is that there needs to be more research and understanding, however, I hope, at least more is known from a patients eye view now than before.
- The age range of people contracting GBS/CIDP is around 35 to 64 - which is lower than generally assumed (this could be countered by the fact that younger people use computers therefore are more likely to fill in something on-line).Comments that this is more found in males than females does not seem to be borne out either.
- The actual fitness levels of the people who get GBS/CIDP have nearly 90% as active or fairly active. Is this because they have more active immune systems? or because they travel more and expose themselves to more hostile/less sterile environments? or have more injections.....
- It is definitely the extremities that are mostly affected, with the feet being slightly ahead of the hands. However CIDP has a higher affected area all over the body than GBS (more areas affected by around 20%)
- IVIG is the most proscribed treatment and seems to have a reasonable success rate, plasma is an alternative in some countries and steroids are more effective against CIDP than GBS, but all treatments have a fair degree of uncertainty about whether they will work at all and there is no miracle cure!
- Men seem to complain less than women (that is a generalism about illness and going to doctors anyway). However women seem to get on with things and cope with pain better!
- A high number of people with GBS are still stating they have after effects/major issues. The areas this has shown up in are getting around, nerve pain, how healthy are they now and ability to work. So if GBS is acute and a one hit illness, people should be able to return to a reasonably normal life afterwards? It is commonly stated that 80% of people make a full recovery from GBS and 20% from CIDP. Whilst the results certainly back up the latter, there seems to be a lot less people making anywhere near a full recovery from GBS and as for being acute (it is certainly not "a cute" condition!), a significant number appear to be having long term residual effects. I would suggest that the boundaries and differentials put in place between GBS & CIDP need re-examining and that the leas than 4 weeks - GBS; over 8 weeks - CIDP is not as accurate as the medical people think and there is always the people in between......
My actual concern with the people who filled the survey in; are potentially these still have issues therefore some of the answers and findings are swayed, but as they were kind enough to fill in the details all I can do is present and comment on the results/answers I have.
The final conclusion is that there needs to be more research and understanding, however, I hope, at least more is known from a patients eye view now than before.