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!!


  1. Drew, I have to admit I am a bit surprised by your choice in treatment. I am on IVIG once a month. Sure, it's a bit of a pain to go spend a day in the hospital (half a day for me, my infusion goes quick). Steroids have so many long term health effects. Such as osteoporosis. But it is whatever the patient feels best with and if that is what is working for then that is awesome!!! My personal preference is the IVIG and hope to never be on steroids. Even if it would be a lot cheaper. :)

    1. The problem was the information (or lack) given to me at the time. Hence the survey, trying to find more out.