Anyone heard of Visceral neuropathy? I would love to hear from other sufferers

[catwomanno1]

Hi I was assured by a family member that my rare condition would be found on the site. It wasn’t! Anyone heard of visceral neuropathy or even better is a fellow sufferer then I would love to hear from you. Over the last 17 years I have searched everywhere to find other sufferers or anyone with info about the condition. I have found so little info that I’ve relied upon my consultant who’s been brilliant. He initially described it as being like having MS of the gut which has been a brilliant description. I’ve learnt so much from him but unfortunately he’s the only specialist in Scotland but he’s reducing his working hours as he plans to retire very soon. I would love to share what I’ve learnt especially about treatment but would love to hear about other sufferers experiences. I’m a great believer that we can learn so much from each other. I really hope to hear from someone it is an extremely rare condition but their are other sufferers out there. Please contact 😀😉