Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@oldshep

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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Hello Larry @oldshep, Welcome to Mayo Clinic Connect. I also have idiopathic small fiber peripheral neuropathy. I posted my story and what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

I know it can be frustrating trying to find something that helps with the symptoms of your PN. Can you share a little more about your symptoms and any treatments you have tried?

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@oldshep I have idiopathic small fiber neuropathy. I was diagnosed in August 2017. I feel that some supplements have helped stabilized or slowed down the progression of my conditions. I know could be quite depressing until one finds some relief. Please hang in there and I am positive you will find some relief soon.

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@oldshep Hi Larry I have idiopathic progressive peripheral neuropathy. It ain't no fun as you know. I do not have diabetes and tests do not confirm an immune system reason. I did score on the ANA blood test which is indicative of an autoimmune disease, but further tests done by a rheumatoid doctor set that aside?? I have found that if you go to 4 different doctors you get 4 different diagnosis. I know the neuropathy and IDIOPATHIC lymphedema is on target. I am assured of that when I look at the swelling of my leg and feel the nerve pain in my feet and legs. Someone on here said it is idiopathic because the idiots can't figure it out and they don't want to try. Sounds right to me. Are you being seen by a neurologist? When a doctor can identify the reason for neuropathy it can be quite manageable. Neuropathy is caused by another physical problem and when that problem cannot be identified then all that is treated is the neuropathy. There is not to my knowledge a fix for neuropathy, but rather ways of curbing the pain and addressing the problems that the neuropathy provides us with. The neurologist I am currently working with is addressing B12 as an issue and has prescribed weekly B12 shots. From research on neuropathy it was found that lack of B12 or the inability of the body to absorb it properly can cause neuropathy. You may want to discuss this with your doctor. I don't know how many people in this group have what their doctor refers to as idiopathic neuropathy. Seek all the information you can about peripheral neuropathy and find a doctor who doesn't just throw his/her hands up and prescribe Gabapentin. Gabapentin is the drug of choice prescribed by doctors. I am not saying it is a bad medication, but there are many other choices. I take 600 mg daily of Gabapentin and 50 mg of Amitriptyline. Maybe I would be in more pain if I didn't take it is all I can say. I hope I helped some. There are many people on this site who can offer much more. We all share our experiences. Good luck. Stay in touch with us.

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@jimhd

@roxye

I was around 50 when I started noticing signs of neuropathy, beginning in my feet. I'm still ambulatory at 69, so neuropathy isn't a death sentence.

Jim

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True, but you have no social life

Liked by rwinney

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I am one of the many on this site with idiopathic peripheral neuropathy which is progressing very slowly. My story is not positive as I have tried many approaches and have found no real help.However, I do believe you must try most of the approaches because one may help you as it has someone else on this site. I tried nine different medicines, acupuncture, a cannabis regimine, various types of therapy, spinal stimulator, and various types of physical therapy. Some of the meds were helping slightly but the side effects were not tolerable to me. I am living with my condition….living with what I call the "new normal".

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@fonda

I am one of the many on this site with idiopathic peripheral neuropathy which is progressing very slowly. My story is not positive as I have tried many approaches and have found no real help.However, I do believe you must try most of the approaches because one may help you as it has someone else on this site. I tried nine different medicines, acupuncture, a cannabis regimine, various types of therapy, spinal stimulator, and various types of physical therapy. Some of the meds were helping slightly but the side effects were not tolerable to me. I am living with my condition….living with what I call the "new normal".

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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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I agree with @fonda. I too have idiopathic PN, and have had the million dollar work up at my local university hospital. The fact that it is idiopathic does not in any way mean that the doctors are idiots. This disease is very difficult, in part because there is comparatively little known about it. Also, it is chronic and manifests in many different ways. Even after the work up by university experts, I am in the same place as @summertime4. Some things are just unknown. Let's hope there are answers soon.
Like all of us who are patients, I have tried numerous meds and different alternatives, without any real change. What makes it so hard in part, is that the goal is a moving target. My symptoms are effected by different meds, changing moods, the weather, the seasons, what I'm wearing and doing, and many other variables. Trying to decide specifically what is working or not is nearly impossible.
I'm going to be on low dose naltrexone soon. I'll post if it helps.

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@jeffrapp

I agree with @fonda. I too have idiopathic PN, and have had the million dollar work up at my local university hospital. The fact that it is idiopathic does not in any way mean that the doctors are idiots. This disease is very difficult, in part because there is comparatively little known about it. Also, it is chronic and manifests in many different ways. Even after the work up by university experts, I am in the same place as @summertime4. Some things are just unknown. Let's hope there are answers soon.
Like all of us who are patients, I have tried numerous meds and different alternatives, without any real change. What makes it so hard in part, is that the goal is a moving target. My symptoms are effected by different meds, changing moods, the weather, the seasons, what I'm wearing and doing, and many other variables. Trying to decide specifically what is working or not is nearly impossible.
I'm going to be on low dose naltrexone soon. I'll post if it helps.

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Took the words right outta my mouth. Could not have said it any better. It brings me comfort only to know that I live among many many others affected in this way because my family sure doesn't understand. They hang their hat on money and going out of the area, to big universities etc… the old money talks theory. I know they care and just want the best for me but it gets exhausting to hear over and over again. Im going to screen shot your post Jeff and share with them. Thanks for having my back! -👍🏼

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Jeff, please post how the LDN works for you. That’s my next go-to I think. My PN has gone from just feet and occasionally hands to my entire body minus front of torso and head. As you said, it’s here then moves there, mild then painful, fair days and awful days…no rhyme or reason!

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I will definitely post. I hope it's a good answer.

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@oldshep

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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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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@wilcy

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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@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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Tks for response

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@jimhd

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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Tks, Wilcy

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@jimhd

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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