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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: May 26 10:50am | Replies (6004)Comment receiving replies
I'm Steve. My neurologist says I have peripheral neuropathy (non-diabetic) I use a walker for balance. I have Crohn"s disease which is an autoimmune disease. Over the last several months it seems to have gotten worse ad has affected my fingers noticeably. Also my vision has worsened (like I have a sheet over my head blocking the light). As well, my speech is slurred (no stroke or anything related). I also drool quite a lot. I don't have chronic pain, but sometimes I take a gabapentin at night for acute "shooting" pain in my feet.
I've been told by my doctor that "it is what it is" and that there is no cure. I can live with that, but almost every day I receive or see something on "a cure for neuropathy". Maybe because "misery loves company" I'm reaching out to see what others experience. I look forward to seeing any response. Thank you, Steve
Replies to "I'm Steve. My neurologist says I have peripheral neuropathy (non-diabetic) I use a walker for balance...."
Your doctor is correct; there is no cure for neuropathy. I don't if your doctor was a neurologist but my neurologist used the exact same words. Perhaps some folks have found help with some treatments but there is no cure, sorry to say. God bless you Steve.
Good evening, @sszymczak. Welcome to Connect. You are in the right place if PN is your challenge. SPN (small fiber neuropathy happens to control my life right now. You are also correct that there is no cure. However, we all seem to spend much time hunting for supportive solutions. I also have those acute "shooting" pains in my feet. However, they are relatively new, and I struggle to find the best way to control them. So far, I have increased my "foot time" to twice a week during my MFR sessions. I have also added a Yoga stretch called "Legs up the wall." That is very helpful as part of my wake-up routine in the morning.
During the day, I wiggle my toes while sitting and make sure my feet will support me when I stand. At certain times when the barometric pressure is low, I use medical cannabis to ensure restful sleep.
I think you will find the following sites helpful..
https://www.foundationforpn.org/
https://neuropathycommons.org/
Please tell me a bit more about your slurred speech. Does that happen when you first wake up or have pain somewhere in your body?
May you be safe, protected, and free of inner and outer harm.
Chris
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Please find a new Dr. Hopefully one that has experience with Sjogren's Syndome, rituximab treatments, and Low Dose Naltrexone. And all means, educate yourself so you know all you can. As someone with Crohn's, Sjogren's SFN and MDS (and BTW: glaucoma) I would not accept that from a Dr. "It is what it is!" is not a stance I am willing to accept. PubMed papers are a good place to start. You may feel lost at first but look up words you don't know and go from there. Best wishes.