Hi Ron,

What a terrible time you had but so glad to hear that you have come through that sadness. Like Silverlady I was wondering what tests you had done for your PN. Your three years of PN observation are certainly appreciated as there are people here including myself who have had more recent symptoms and are wanting to learn as much as we can to try and make sense of what is happening to us.

For me sleep needs to be more like eight or nine hours - always has been. I must admit the #%@^ internet can tend to tempt one away from getting to bed at an earlier hour....so I tend to get up later - not good!

Julie, the burning started intensely in both my lower legs (not feet). I had it a few days off and on last year and was puzzled by it, but it was not until June 2007 that it became everyday, then in July it became everyday ALL day. Early August within one week it advanced to above my knees to my hands/fingers, arms, cheeks, chin, feet. At that same time (early August) I was quite ill with nausea, epigastric pain, extremely heavy eyelids, extreme fatigue and lethargy so my GP sent me straight to the hospital suggesting possible Guillane Barre. The hospital sent me home when my reflexes tested fine. I remained unwell for nearly two months.

Although I am having some good days now I have overwhelming fatigue overcome me frequently. I still am getting new 'spots' where the burning develops like the side of my neck - most recent. I'm now also having more electric current type sensations, although the fasciculations seem to be a bit less frequent now.

I still haven't been checked for Coeliac Disease nor had a Glucose Tolerance Test done, QST or skin punch biopsies - so these are my next eliminative tests.