I am appealing to anyone out there who suffers with sensory neuropathy. My mum was diagnosed 2.5 years ago and is rapidly declining in health. May I tell you about her treatment so far? I would love to know how you cope with your own or a close relative's pain. It is awful not being able to help my wonderful mum who, were it not for her Christian faith, would have ended her life by now.
My mum is under a consultant at the Walton Neuroscience Hospital in Liverpool, where she has undergone a CT scan, a lumbar puncture, a whole plasma change, MRI, scans of the abdomen, nerve conductive tests and full blood counts (two or three times) - all came back normal. Her blood pressure is normal. In other words: perfectly healthy. She was given a capcaicin chilli patch by Dr. Frank (a pain specialist) as part of a trial but she suffered severe burns and the trial was halted. Mum has been told that the most common causes of her neuropathy are diabetes and trauma. She had a very bad fall 18 months prior to the onset of her problems but her consultant sees no correlation between the fall and her illness. He said in 60% of neuropathy cases there is no hope of finding its origins. Mum is one of the 60%, he said.
Her chronic pain is in her arms, shoulders, neck and hands. She is also very troubled with a severe 'tightness' in her torso (from under her breasts to under her stomach). She has awful balance and staggers like a drunk. She uses a crutch and has to now hold on to me when we walk. She comes down the stairs on her bottom. She burns her arms when not realising she is spilling hot liquid on them. She doesn't know when she has trapped her fingers in doors.
She is currently taking 10mg of morphine twice-a-day plus the maximum dose of Gabapentin (900mg three times-a-day). She is also on Duloxetine for pain relief (an antidepressant) which is not working. She is pushing to return to Fluoxetine, which gives her some relief, apparently. She has tried amoxicyline but it made her fall over a lot and 'did her head in'. Walton hospital have now 'washed their hands of her', offering group counselling as a last resort to share with others who live with chronic pain. I am so depressed that I can't take this burden from her. She is otherwise healthy and is grieving the loss of her limbs and balance greatly. Psychologically she is going downhill as her pain gets worse.
Please, please help with any advice or experiences you would be willing to share. Thank you so much.