May 15, 2013 at 9:30 am

Lovely to hear from you. I live in regional Australia and like your husband it is very difficult to get IVIG. I was told by my neurologist that it would t be considered until I can’t walk due to the cost and the fact that here the Red Cross covers the cost. So in the meantime I just continue to increase my pain medication every 3 weeks or so. But that being said I was once able to decrease for a short period of time. Like your husband the digestion symptoms are very new and no one has said the cause is the neuropathy. Your poor husband if he is like me he is sick and tired of being sick and tired – I frequently feel like I am getting the flu but it never eventuates. I must say I am very intrigued by the progression of your husbands disease because there doesn’t appear to be much out there for people who are given no real treatment and rate of progression, though this having been said I realise everyone is different. Many thanks for your contact and I hope your husband soon receives the treatment he needs.