Sensory axonal polyneuropathy Results

Greetings - my husband has been living with neuropathy symptoms for a few year now. He's been diagnoses with axonal sensory polyneuropathy. We've been to neurologists, naturopathic specialists, pain clinics and various doctors. Recently he had a series of tests at the hospital here in Toronto, including genetic testing. Conclusion: he has peripheral neuropathy, and aside from medications, doctors can't ' offer much more. They have suggested a new medication, Nortriptyline in low dose (The others he has tried, like Gabapentin, have not helped at all). Even the genetic testing did nothing to shed light on the cause and the prognosis. So indeed, it's frustrating. He now uses two canes (or a walker) because balance is an issue, and he has fallen a few times. Even more upsetting is that recently he has developed issues with urinary and bowel incontinence. He can't sleep at night because of the burning pain and because he has to go to the bathroom so often. He is supposed to do exercises at home, which he is not keen on doing, but perhaps they would help a bit. Only other thing would be physiotherapy. I do think that sometimes he's his own worst enemy because he tends to be very negative. Especially when he tries to do something around the house, and then he feels the pain even more afterwards. However, he has been told that it's very important to keep moving. He has injections of steroids every three months for his back, and that seems to help him overall. So a complicated situation, but plan of action for now - healthy diet, trying to get him to do more exercises, Tylenol for the pain in addition to this new medication, distractions to help him relax..... and positive acceptance to motivate him. i wish you all the best in your journey, and would really like to know how you are doing.

@mlor - Sorry to hear about your husband and having peripheral neuropathy is a challenge on many fronts and not limited to physical disabilities. I too have axonal PN and in my case both sensory and motor. I'm fortunate not to experience pain but I have numbness and poor balance. I was first diagnosed 9 years ago and due to many questions, I was able to go to Mayo in MN in 2020. They told me what I have but not why. They could not offer any treatment plan and like most, no cure. They did suggest that exercising and keeping active could slow down progression. As it stands, they were right. I've been in and out of physical therapy and do home exercises and walk as much as possible. He is fortunate to have you as a caring person, good luck to both of you. Ed

Thank you most kindly - with empathy and best wishes ML