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DiscussionSensory axonal polyneuropathy Results
Neuropathy | Last Active: Jul 11 10:41am | Replies (13)Comment receiving replies
Replies to "Has anyone had any experience with axonal sensory Polyneuropathy? I have been to two neurologist with..."
Hi @joeys62, I combined your discussion with an existing discussion titled, "Sensory axonal polyneuropathy Results" - https://connect.mayoclinic.org/discussion/sensory-axonal-polyneuropathy-results/.
I did this so you could meet @irisjolie who recently posted their experience with getting diagnosed with axonal polyneuropathy as well.
I think Dr seems NOT to explain as it seems a no way back to normal. There are in depth Dr. videos in YouTube actually showing simulations from inside body. I know that there is no going back as nerve damage is not something they cure, just managed and that needs to be a Dr specialized “Neurologist”
I had neuropathy then polyneuropathy and just last week was diagnosed with Axonal Neuropathy
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.
Hi! I was never promised I could walk after a few months, but I tried. I too was given no medical explanation for the PN that hit suddenly. But I was in a wheelchair, had a lot of physical therapy to make me stronger. After 6 months I was out of the wheelchair. Today I use the walker when out, but walk unassisted inside the house and in short walks (albeit not the most gracefully). I keep a cane nearby. I drive!
So yes, some of us can get back on our feet with physical therapy. We need to keep our muscles strong! Wishing you the best success in living with this unfortunate condition, while trying to remain positive.