I have just published my independent survey into GBS/CIDP.
It can be found @ http://gbs-cidp.questionpro.com 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.
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