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Dec 27, 2018 · Living with Neuropathy - Welcome to the group in Neuropathy


Thank you very much for your reply concerning medical cannabis.i discussed it with my neurologist when I saw him back in November and he said it was worth giving it a try but that he has had mixed reviews from his patients. I will make an appointment with the general practitioner in early January to obtain a prescription. My symptoms have been pretty severe lately but am trying to focus,on other things instead but it's very difficult! Anyway I wish you all the best and hope we all manage to find help in coping with our pain in 2019.
Best wishes Danielle from London, UK

Nov 9, 2018 · Living with Neuropathy - Welcome to the group in Neuropathy

Hello John,

Many thanks for your message. I will look into the possibility of taking supplements as suggested by your good self. I have an appointment at the end of November with my neurologist here in London so will let you know how I get on. I was also wondering if you have ever heard medical cannabis helping with neuropathic symptoms. Cannabis for medicinal purposes has just been made legal here in the UK but I am not sure if it will be prescribed for neuropathy – no doubt it will have to go through clinical trials before it gets approval for certain disorders. Thank again for your help and support. Regards Danielle

Nov 6, 2018 · Living with Neuropathy - Welcome to the group in Neuropathy

Please see my posting a few minutes ago. I look forward to hearing about other people's experiences and strategies for living with this very uncomfortable and under-researched disorder. I have been unable to find a great of help in the UK although there is currently a lot of research being done in the major teaching hospitals here in London. Regards Danielle

Nov 6, 2018 · Living with Neuropathy - Welcome to the group in Neuropathy

Hi, I am from London, UK. I was diagnosed with idiopathic small nerve fibre neuropathy two and a half years ago but have had the symptoms for at least 12 years and these have gradually worsened over time. My symptoms are mainly itching and burning on scalp, face and arms and prickling sensations on my legs, feet and arms. I have tried all the medications recommended for SFN as well as lidocaine infusions, botox injections into the scalp but nothing has worked to date. I am able to work part time and try to enjoy life as much as possible despite my symptoms. I have unsuccessfully been trying to find out if I can have intravenous immunoglobulin but have told that 1. there is a shortage of it in the UK and it is very very expensive and 2. there have been no clinical trials performed in the UK to date to prove that this treatment is effective for SFN. I am still looking into this as I am not giving up just yet! I was wondering if anyone out there has found immunoglobulin to be effective/helpful for idiopathic SFN.. Of course as in any treatments available for SFN they only mask the symptoms and do not cure the disorder. I am also going to investigate whether diet has an impact on neuropathic symptoms and I was wondering if anyone else has managed to find out what kinds of foods to avoid etc. I try and live a healthy lifestyle but there may be foods which I should avoid which may possibly help my symptoms? Any advice would be greatly appreciated! Regards Danielle