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Living with Neuropathy - Welcome to the group

Posted by @colleenyoung, Jul 14, 2017

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?

REPLY

@wellness3070

Anxious to discuss peripheral leg neuropathy and treatments.

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I have had ideopathic peripheral neuropathy almost 30 years. It affects both legs, calves down. I have tried just about everything I hear about but nothing has helped. I also have PKD & PLD but haven’t needed treatment for them. I take gabapentin, methadone, & amtriptylene for pain but have a lot of break thru pain. My toes are the worst. I am always looking for ways to help the pain. I use lidocaine patches when needed.

@wellness3070

Anxious to discuss peripheral leg neuropathy and treatments.

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Hello @penadr, welcome to Mayo Connect. I am glad you found us. This is a great place to share your story and ask other members questions. If you read through the discussion and want to tag a specific member, type their username (the @xxxxxxxx where xxx’s are their username). This will tag them and they will receive an email notification.

Are you able to share some of the different treatments you have tried?

Hopefully others will join in the conversation and offer what has worked for them.

John

I am a diabetic and have recently begun experiencing numbness in my left leg and foot. My doctor suspects neuropathy but has not prescribed a specific treatment for the condition.

Welcome to Mayo Connect @jazzlady1, I’m happy you found us. Connect is a great place to ask questions and learn what other members are doing for treatments for similar health issues. Neuropathy can have many causes and it would be good to get a diagosis so you will know what you are up against. If your doctor suspects neuropathy, has he offered to setup an appointment with a neurologist or have some tests done to give you a diagnosis?

John

@jazzlady1

I am a diabetic and have recently begun experiencing numbness in my left leg and foot. My doctor suspects neuropathy but has not prescribed a specific treatment for the condition.

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WHICH DOCTOR? SEE A NEUROLOGIST AND GET AN EMG.

@jazzlady1

I am a diabetic and have recently begun experiencing numbness in my left leg and foot. My doctor suspects neuropathy but has not prescribed a specific treatment for the condition.

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Are u the one that had foot drop correceceted?

@jazzlady1

I am a diabetic and have recently begun experiencing numbness in my left leg and foot. My doctor suspects neuropathy but has not prescribed a specific treatment for the condition.

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Colleen how do I get unsubscribed from all groups? Way too much email to read. Thanks

Nancy Shermoen~

@jazzlady1

I am a diabetic and have recently begun experiencing numbness in my left leg and foot. My doctor suspects neuropathy but has not prescribed a specific treatment for the condition.

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Hi Nancy (@upnorthnancy), to unsubscribe from all notifications click your profile at the top right of the window, select Account Settings then go to the bottom of the windows and use the Disable All Notifications option.

John

@wellness3070

Anxious to discuss peripheral leg neuropathy and treatments.

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Is my assumption that the Lidocaine patch is more potent than Lidocaine cream?

Jim

I’m posing a question regarding symptoms experienced by a close family member who has PN… which kind of neuropathy he has has not been determined even though a significant amount of time has been spent trying to figure it out. First of all … he has Type 2 diabetes, has had to have a stent implanted, gets shots in the eyes to prevent blindness, the neuropathy has started to affect bladder and all in all has made for a very painful result in the last 2 years. Some background – mother has neuropathy although evidently as a result of chemotherapy. He has recently developed a patch of skin on his inner ankle that is rough, scaly and very painful. He describes it as like a bad burn. Can’t touch it the sheets when trying to sleep. The patch is about 7 inches long by 2 inches wide and as if the neuropathy wasn’t enough – now this. Anyone else have anything similar happening in conjunction w/PN?

@wellness3070

Anxious to discuss peripheral leg neuropathy and treatments.

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Hi, I use a prescription cream from a compounding pharmacy. It has 3 ingredients.: lidocaine, pilocaine, keptoprofen. My neurologist just made it stronger to handle more severe “needles” in my hands and wrists. It takes the edge off, especially at night for sleeping.

@mfobrien36

I’m posing a question regarding symptoms experienced by a close family member who has PN… which kind of neuropathy he has has not been determined even though a significant amount of time has been spent trying to figure it out. First of all … he has Type 2 diabetes, has had to have a stent implanted, gets shots in the eyes to prevent blindness, the neuropathy has started to affect bladder and all in all has made for a very painful result in the last 2 years. Some background – mother has neuropathy although evidently as a result of chemotherapy. He has recently developed a patch of skin on his inner ankle that is rough, scaly and very painful. He describes it as like a bad burn. Can’t touch it the sheets when trying to sleep. The patch is about 7 inches long by 2 inches wide and as if the neuropathy wasn’t enough – now this. Anyone else have anything similar happening in conjunction w/PN?

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Hello @mfobrien36 – it sounds like it could be neurodermatitis. Mayo Clinic website has a description and picture here:
http://www.mayoclinic.org/diseases-conditions/neurodermatitis/multimedia/neurodermatitis/img-20008675

I have some rough scaly skin around my ankles but it doesn’t look bumpy like a burn and it’s not painful. Has they talked with their doctor about the patch of skin? If not I would recommend it as soon as possible.

John

Yup, doctors have been consulted and so far, no info. Thanks for the lead website, John. Will forward it on.

I’m Hugh, new to this group, joining because they tell me I have peripheral neuropathy. Having been to Mayo for the 2-day Pain Rehab event, I am impressed by Mayo and interested in this group. I hope to be useful, and to be informed and advised.

@wellness3070

Anxious to discuss peripheral leg neuropathy and treatments.

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HI @penadr, what does lidocaine patches do for neuropathy?

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