Living with Neuropathy - Welcome to the group

Hello. This is my initial post and my main question is: Are there patients on this platform who have idiopathic progressive peripheral neuropathy? I have had testing and do not know where to go next! Thanks in advance for any helpful information
Larry

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Am same as you except I was diagnosed with colon cancer 6 years ago! Have neuropathy in feet and sometimes fingers! Have had shots, pills, back surgery and still have it! Am going to have spinal cord stimulation wires in back! Blue cross making me see shrink first! Guess they think I’m crazy!

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Hi,and welcome, @oldshep

My hand is raised. I also have idiopathic peripheral neuropathy. I visited a neurologist around ten years ago because of tingling in my legs and feet. He did a nerve conduction study and told me that I had idiopathic pn. Idiopathic is a fancy word for "I'm clueless about the cause". By two years ago, after trying every medication available for neuropathy, as well as a string of meds prescribed by my pain specialist, and nothing helped except for morphine sulfate contin. Lyrica was working for a few weeks until I had a bad reaction to it and had to go to the ER and stay in the hospital for a few days.

In June of 2017, I had a spinal cord stimulator implant because I was experiencing such pain in my feet. I had 80% pain reduction. It felt amazingly wonderful. It continued to be effective for a year or so, then the pain started to get worse again, so every 3 months I meet with the company rep, and he adjusts the settings, and I feel better again, until it's time for another adjustment. Even though there are days when the pain is bad - usually because I did a lot of walking - it's still better than it was before the stimulator implant.

Recently, my pain specialist had me try yet another medication, and Surprise! It works, and without the unacceptable side effects of meds I'd tried over the past 5 years

I've had autonomic neuropathy added to the mix. It's in the early stages, so the symptoms are manageable at this point. Several medical issues I have could be attributed to it: Tinnitus, double vision, urinary, numbness in my fingertips and face, starting to be clumsy, sudden loss of knee muscles that puts me on the ground with no warning.

Everyone progresses at their own pace, making it impossible to give any kind of prognosis. We learn to take it as it comes, which is a good way to live anyway. Have you experienced progression as I have? Where does it affect you?

I think you'll find some answers to your questions as you read what others have said about their experience. I've learned a lot about all kinds of things here at Mayo Connect, and even more importantly, I've found great support here.

Again, we welcome you to Mayo Connect. I hope you enjoy your stay.

Jim

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Hi,and welcome, @oldshep

My hand is raised. I also have idiopathic peripheral neuropathy. I visited a neurologist around ten years ago because of tingling in my legs and feet. He did a nerve conduction study and told me that I had idiopathic pn. Idiopathic is a fancy word for "I'm clueless about the cause". By two years ago, after trying every medication available for neuropathy, as well as a string of meds prescribed by my pain specialist, and nothing helped except for morphine sulfate contin. Lyrica was working for a few weeks until I had a bad reaction to it and had to go to the ER and stay in the hospital for a few days.

In June of 2017, I had a spinal cord stimulator implant because I was experiencing such pain in my feet. I had 80% pain reduction. It felt amazingly wonderful. It continued to be effective for a year or so, then the pain started to get worse again, so every 3 months I meet with the company rep, and he adjusts the settings, and I feel better again, until it's time for another adjustment. Even though there are days when the pain is bad - usually because I did a lot of walking - it's still better than it was before the stimulator implant.

Recently, my pain specialist had me try yet another medication, and Surprise! It works, and without the unacceptable side effects of meds I'd tried over the past 5 years

I've had autonomic neuropathy added to the mix. It's in the early stages, so the symptoms are manageable at this point. Several medical issues I have could be attributed to it: Tinnitus, double vision, urinary, numbness in my fingertips and face, starting to be clumsy, sudden loss of knee muscles that puts me on the ground with no warning.

Everyone progresses at their own pace, making it impossible to give any kind of prognosis. We learn to take it as it comes, which is a good way to live anyway. Have you experienced progression as I have? Where does it affect you?

I think you'll find some answers to your questions as you read what others have said about their experience. I've learned a lot about all kinds of things here at Mayo Connect, and even more importantly, I've found great support here.

Again, we welcome you to Mayo Connect. I hope you enjoy your stay.

Jim

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It is good to hear the spine stimulator worked for you. What was the new medicine that is helping you now?

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@wilcy An evaluation by a psychiatrist was required for me as well. The psychiatrist wasn't quite sure what the point was, either. The good news is that the appointment with the psychiatrist came at a critical time for me. I was taking a nosedive into the dark hole of depression and suicidal ideation, and really needed to talk with a therapist. He got me on the priority list of patients to see the new therapist, and I know I owe my life to him.

Jim

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