Sunday, 22 April 2012

April 22 - Update 7

Just come back from the GBSSG (GBS Support Group - UK) annual meeting.  There are some really clever doctors and professors in the world!  Have learnt loads about the illnesses (primarily GBS & CIDP, plus the related ones/variants - Miller-Fisher, AMAN, MADSAM - to name a few).  I have requested a copy of some of the slides so I can put them on my next post and explain some of the great stuff I was told about - as I want to get my facts right.

Also learnt about an excellent research library, where if you want to know about certain illnesses and what works/doesn't from medical/clinical studies, they correlate all the worthwhile trials into one place and it is free (to us in the UK):

Go to:

If you want to know about GBS or CIDP research just search on those terms.  The group have been granted some money for collating the results and turning them into laymans language, that means understandable to you and me!, by the GBSSG.

I have been contacted about my survey and the medical board for the GBSSG would like to review the questions and maybe recommend some changes - which I think is great and have agreed to.  In return they may publish the web page in their forums and newsletter so we all win :-)

Now for the "fun" news - The DWP have lost my file!!!!!!  So they wanted me to fill in all the paperwork again!  I phoned them up and explained I had done it electronically in the first place, so please go and find the copy and I have sent you the main doctors report on my condition electronically as well (scanned it in) - so whilst you do not have all the 3 months worth of info you do have the relevant parts.  If you want some more please let me know and I will try and find/collate it.  They replied to me on Friday afternoon and said they think there was enough information for a decision and I would be receiving a letter next week (fingers - and everything else well and truely crossed!)

My Sarcoidosis review is now this week (Wednesday) and the steroids are still causing headaches and playing nasty games with my blood sugar levels, but feeling is continuing to return to my legs and I will get back on the Wii Fit this week and see how it goes (please don't feel too sorry for the penguin or skier - as they have had plenty of time to recuperate!)

Have you seen this great program - wordle! - copy in some text and enjoy the patterns.  I put in my original blog and look what came out:

The bigger the words, the more often they occurred, so on that basis I want time to get back for tests (NOT!)

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