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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 8 hours ago | Replies (6623)Comment receiving replies
With the diagnosis of idiopathic axonal polyperipheral neuropathy my doctor has not given me any help as to how we can manage these symptoms other than we will do annual EMG's to see how things are progressing or worsening. It seems that there should be something that could be done for the symptoms that I have, but I have been left very discouraged the comments from my doctor. When he first saw me 18 months ago, he said that I would likely be in a wheelchair within 10 years. I am looking for some kind of support out there rather than just let's wait and see how bad it gets for you.p
Replies to "With the diagnosis of idiopathic axonal polyperipheral neuropathy my doctor has not given me any help..."
I can only advise you to request physical therapy and to keep moving. Both my neurologist and podiatrist were not encouraging. No advise other than supplements. Idiopathic small fiber peripheral neuropathy without pain. I had to ask my primary for physical therapy and it was a great help. I can get around safely, albeit a bit more slowly, with a cane. I made a great effort to return to volunteering at the local animal shelter and, while I cannot do all the physical things I did before, like walking pitties, I can do laundry and dishes.
You will have to push and advocate for yourself. Doctors apparently think they can only treat pain, if you have pain. They do not look at the whole person and how this diagnosis affects us. Good luck.
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Welcome @dwsouthwick, Looking for support and what helps is the very best thing we can do to help ourselves when they tell us there's no cure we just have to wait to see how it progresses. That's really what brought me to Connect back in 2016 after being diagnosed with idiopathic small fiber PN. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.
If you haven't already seen the site and you want to learn more about Neuropathy, the Foundation for Peripheral Neuropathy is a great place to start learning more - https://www.foundationforpn.org/. They also have a YouTube channel where you can find their many webinars on different neuropathies and treatments - https://www.youtube.com/@foundationforperipheralneu4122.
@artemis1886 has mentioned having axonal sensorimotor polyperipherial neuropathy and may be able to share some experience with you. Have you done any research on complementary or alternative therapies for neuropathy?