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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

I have been dealing with facial paresthesia for 3 years is there any hope?

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@tparker010

I have been dealing with facial paresthesia for 3 years is there any hope?

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Hello @tparker010 -- I see this is your first time posting, welcome to Mayo Connect. Connect is a good place to ask questions and see what other members with similar health concerns are doing for treatments. I am tagging other Connect members who have mentioned parathesia in other discussions to see if they can provide any information.

@magg, @peggyj4411, @schnau are you able to provide @tparker010 any suggestions or information?

@tparker010 have you seen a neurologist? Are you doing anything now for treating the facial paresthesia?

Hoping for some answers for you soon.

John

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@venki

I have been suffering from Ulnar Neuropathy. Im 55. I want to be clarified whether I will be having peripheral neuropathy. What are the tests to be taken? I have already taken Nerve conduction test, Colour doppler tests etc. For the past 6 months Im not able to walk freely and my left hand is not also painful.

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Thank U all for the response. I hope this site will be useful to me. As I don't have diabetic I wonder what would be the reason for the Ulnar neuropathy. That too all these tests were taken 10 months back. I don't know whether all neurological problems are progressive.Along with these problems I am also having, osteophytes, brain shrinkage, CSVD & Tinitus in the ears. Anyhow I have decided to live with all these.

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I have just joined. I live in a senior building and have a PN support group here. I have had my PN about 2 years. My skin is very sensitive, I had an infection on my ankle from a shoe that touched it. Just thought I would share some of the strange things that can happen to us.

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@friendyshirley

I have just joined. I live in a senior building and have a PN support group here. I have had my PN about 2 years. My skin is very sensitive, I had an infection on my ankle from a shoe that touched it. Just thought I would share some of the strange things that can happen to us.

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Hi Shirley @friendlyshirley,

Welcome to Mayo Connect! We are glad you found us. Connect is a great resource for asking questions, sharing your story and learning what others with similar health problems are doing for treatments. I can relate to strange things that can happen to us with peripheral neuropathy (PN). You might also be interested in reading and posting in the Neuropathy Group Discussion "If the shoe fits...right?". Here is the link to the discussion:

https://connect.mayoclinic.org/discussion/if-the-shoe-fits-right/bookmark/?ajax_hook=action&_wpnonce=89937634ee

Do you have any other symptoms with your neuropathy that you can share?

John

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I've recently been diagnosed with small fiber neuropathy with unknown cause. I first started having pain about 4 years ago. I am just a bit depressed and discouraged and need to know I'm not alone.

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@alaskaann

I've recently been diagnosed with small fiber neuropathy with unknown cause. I first started having pain about 4 years ago. I am just a bit depressed and discouraged and need to know I'm not alone.

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Hello @alaskaann, welcome to Mayo Connect. Connect is a great place to ask questions and learn what others with similar health problems are doing for treatments. Let me be the first to tell you that you are not alone. I also have idiopathic small fiber peripheral neuropathy which I've had for 20+ years.

Do you have any pain with your neuropathy? Also, is the neuropathy in your hands and feet? I only have the numbness and tingling with mine. If you want to read the details of my story, I've shared them in a post here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985

It's understandable to be discouraged and a bit depressed. What is good is to learn everything you can about your health situation and try to find something that helps you. You are your best advocate.

Do you have any questions you are trying to get answered?

John

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Thank you for your quick reply and encouraging words. I have pain ranging from numbness, tingling, stabbing, burning and buzzing. Sometimes it feels like the " Aurora Borealis" of pain ebbing through my body, mainly in my legs, arms and left side of my face. I was taking gabapentin, then switched to Lyrica after seeing a neurologist. However, I had some bad side effects with Lyrica and weaned myself off of it. So, for about 2 weeks, I haven't taken anything. I can't sleep very well because of the pain. ( It took a while to get in to see my family doctor.) She wrote a prescription for Gralise. I'm not sure if my insurance will cover it. I'm wondering about CBD? I also take Cymbalta.

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@alaskaann

I've recently been diagnosed with small fiber neuropathy with unknown cause. I first started having pain about 4 years ago. I am just a bit depressed and discouraged and need to know I'm not alone.

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@alaskaann

You're surely not alone. I have been having burning pain in my feet from idiopathic peripheral neuropathy for a number of years. I tried every medication for neuropathy, with no help. I had a spinal cord stimulator implant in June and the pain is greatly reduced, but not eliminated, unfortunately

I have both small fiber and autonomic neuropathy, still learning.

Medications for neuropathy has helped a lot of people.

Jim

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Hi @alaskaann, there are a couple of existing discussions on CBD here that might be helpful:

– CBD https://connect.mayoclinic.org/discussion/cbd/
– Chronic pain and medical marijuana https://connect.mayoclinic.org/discussion/chronic-pain-2bd75e/

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