Sunday, 25 March 2012

March 25 - Update 4

I have noticed that the Wii fit exercises I can do require basic left and right shifts of weight (as with the Penguin - 119 and the Footballer - 320), however the skier requires small adjustments, that I just can't make - so it is not his fault after all!

My feet and toes are starting to get severe pains. especially at night, but I am not wearing socks in bed for the first time, so I don't know if that has anything to do with it?  However I had an itch on the top of my left foot (near my big toe) and didn't know whether to mutter about the itch or be really happy that I could feel something down there for the first time in nearly a year!

Just as I seem to be progressing with the exercises/feeling and improving, my right knee (the dodgy one from the RTA) has cried enough and is now very painful and won't bend past about 45 degrees without complaining - have I done too much?  All I know is that I am no longer exercising since Thursday and waiting to see the physio on Monday to get their prognosis.  I am wondering why now and how comes I seem to take 2 steps forward and then one or three backwards every time?

I have reduced the steroid dosage, to 30mg every other day, as a number of articles seem to indicate the less time you stay on steroids and the lower the dosage the better.  I hope my consultant doesn't mind, but I wasn't going to wait until mid-May to ask and I don't like the £100+ fee every time I see/talk to him!

Still waiting for the Sarcoidosis consultant; have found out his name and will ring his administrator on Monday to see what is going on, but that will be another £100+ just to see him.  I have to get this all approved by my medical insurance.

Thanks for the survey responses -Now over 180, please keep them coming.  I am going to attend the UK annual GBS/CIDP conference in Bournemouth on the 21st April (as long as I am well enough). I have produced a t-shirt to advertise my survey, I hope I don't get ejected by the stewards at the event :-) !  

If anyone else is going, who reads my blog, I hope to see you there.  You won't be able to miss me (see the front design of my t-shirt below):

Saturday, 17 March 2012

March 17 - Update 3

I have just had over 100 completed surveys (in 4 days) - A massive thank you to all who have responded (This is not the end of the survey - it will run until at least March 2013, so if you haven't filled it in please do).

The initial findings can be found:
or @

Please go and have a look (comments welcome). If you like the results and want to assist in this global survey (and haven't already). please go to:

@ -->  GBS-CIDP Survey

Tuesday, 13 March 2012

March 13 - Update 2

I have just published my independent survey into GBS/CIDP.

It can be found @ or via --> GBS-CIDP Survey

Please fill it in, I want this to be a global response and hopefully find out some interesting trends.  In 11 hours 16 people already have (just click on the link above, it only takes 10 minutes)!

I will publish the results either via this blog directly or via a web link.  The more people that fill it in the sooner I will publish results, but the longest will be 3 months (keep an eye on this blog for updates).

Have just seen consultant who is pleased at the improvement on Steroids, still keep me on 40mg dose every other day. Diabetes is still all over the place, but not as high as when on 60mg - still high the evening of steroids and low the next morning.  Can walk without looking at my feet on flatter surfaces, which is helping.  Think I am about 60% of my old fitness, which is great!

The Penguin on Wii Fit is eating lots of fish (114!) and the Footballer has a headache from heading the ball (and shoes/pandas).  The downhill skier is terrible - I am surprised he hasn't been substituted/replaced :-)

I am now on Vitamin D as well as the rest so that is 5 different pill types, 3 to combat the steroid side-effects and to help with bones!  I am supposed to see a consultant about my Sarcoidosis, waiting for appointment to come through.  Neurologist wants to see me again in 2 months.

Monday, 5 March 2012

05 March - Update 1

I wish the consultants would tell you the whole story about treatments and options, when they give you the choices.  I have done a lot of research over the weekend and found it appears that a significant majority of people with CIDP end up staying on the treatment (IVIG or Steroids) for life, yet the GBS sufferer's seem to be able to either not require any major treatments or get better after one hit.  Now I know this is a subjective comment from where I stand at the moment, but it makes me glad in one way I chose steroids over IVIG (as that would require 4 weekly visits to the hospital), but not in others as I have to be on them for ever and they mess up my diabetes!

Here is a very interesting slide I found on a US GBS/CIDP website (I hope they don't mind me copying it?), depicting the time spans of GBS vs CIDP:

This clearly shows what the difference is in severity over time lapse and how, at the start of all this, my consultant was trying to get me into the GBS category.  BTW:I do not like the look of the red line!

I am just starting to try and exercise in the Wii (Wii Fit) - currently there are only a few exercises I can actually do, but the balance ones are interesting as at least now I can feel the changes so can see how I go.  Anything that involves standing on one leg is definitely out!!