Saturday, 22 September 2012

Update 16 - Survey Results Part 3

On the question of "Where did it start?", the survey said:

It seems quite clear that though the extremities are first to get hit, the majority are for the feet and toes.  What surprises me is that fingers are so high, yet feet beats toes?  I suppose that is because we are all very tactile and when you can't feel with your fingers you know about it very quickly.  Relating that to me, feeling is returning to my legs, but as I never felt with my toes/feet I don't know how much or how quickly as "normal" was not readily known.  Could anyone who has recovery in their fingers comment on this?

Onto the issue of areas affected:

 This has a similar look and feel! (pardon the pun) to the previous one, which I found surprising as I thought the spread would be wider.  The results from GBS or CIDP were quite different:

 What is very noticeable is that a significantly larger proportion of areas was affected for people with CIDP than GBS, yet the actual ratio between areas has similarities.  The biggest variation is actually in the fingers, hands & wrists, where there is a 30% difference between CIDP & GBS.  In fact you could draw the conclusion that GBS rarely affects the upper torso and has a much higher impact on the legs!  Whereas CIDP appears to have a more balanced affect (another pun! - a bit harder to spot?), between the arms and legs.

Out of curiosity I looked at the areas affected between genders:

 Now whilst the areas affected curve for both again looks very similar, what I noticed was in every category of no feeling (red), the male score is higher than the female one.  This can't be coincidence? If you reversed this and looked at not affected (light green) then the difference was even more marked!

Does this mean women are less affected than men? Or they just don't complain as much!!! (I think I've said enough for now).  More in a couple of weeks.

Sunday, 9 September 2012

Update 15 - Survey Results Part 2

I think I made a big mistake right at the start of my survey.  I asked for the age of the people filling the survey in (which is shown in Part 1).  What I should have asked is what was your age when you first contracted the condition (GBS/CIDP)?

So I have done some extrapolation of the date entered, against the age entered, the date the survey was answered and the date when the condition was contracted/diagnosed and I get:

Now if you compare this with the earlier results this changes the age of people contracting GBS/CIDP significantly, so the majority of people were under 45 and very few 65 or over.

Moving onto how the condition was contracted I get some very different results between GBS & CIDP:

What this shows is that significantly more people with GBS thought their condition was due to a virus or other illness and in my view that is because the symptoms occurred much more closely with when GBS was contracted, as CIDP takes a lot longer.  What is also worth noting is that a vaccination is actually deliberately giving you a virus (albeit a "dead" one) so this could be classed as the same.  I know how I contracted CIDP, via a vaccine, but that was easy as it was shortly afterwards that I was laid low by a virus and the rest is below....

The number of doctors/consultants seen was the next question asked.  The results are:

Though a significant number of people did see more than 6 doctors the average number of consultants seen is 3.65 (see below):

What is surprising is that there is minimal difference between any of the categories and I would have expected the consultants seen to be much higher for CIDP than GBS, given the time differential for diagnosis.

The last set of results, are in my view the most interesting so far.  This is based around the question of how fit the person was before contracting GBS/CIDP:

So according to these figures nearly 90% of people were active!  OK so there are bound to be differences in how people marked themselves, but even so this is astounding as I expected this to be more or less even split between the four categories, if not swayed slightly towards passive. I regard myself as fairly passive, though was much more active in earlier years.

Now looking at it for each illness, it seems even more remarkable as clearly CIDP sufferers marked themselves as even more active than GBS, yet the number with GBS who overall were passive is considerably less.

What does this tell us?  One possible interpretation is: If you are more active, then you go to different places and require vaccinations........ Another is that the fitter you are the more healthy you should be, therefore the more active your immune system is....... Or people filled it in wrong?

That is enough to ponder for this part.  I will publish the next set in a couple of weeks and I hope you find them interesting.