Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @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?

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

michellefarren | @michellefarren | Jul 26 9:08am

In reply to @louellenc "Hi. I’m Lou Ellen. I’ve been having nerve pain, fatigue, exhaustion, vision troubles and other symptoms..." + (show)

Hello@louellenc , this is my first time on this page and I noticed that you commented like 54 minutes ago so I just wanted to respond to some of the things you have posted here. I was diagnosed with neuropathy 3 years ago and at that time I was getting numbness and shooting pains and my foot area and my leg. Now and the past 3 years it has progressed I have absolutely no feeling in my feet and my legs up to my knee. I couldn't even walk I was using a walker and then I came but I started swimming and I got a lot stronger now I can even sit in the bathtub and get out. People often wonder how I walk and I really think it's sensory. You mentioned all the testing you got but you didn't mention the results of the EMG. I was just curious I have had several at least 12 or more and it's just progressing. I also have it in my hands. The one thing I want to mention to you is I went to the eye doctor because I need a glasses and I found out that I have optic neuropathy as well. I take a very large dose of Gabapentin perhaps you need more I know it has side effects for some people but I take 3600 mg a day and it really helps at high dose. I go to the eye doctors because I need glasses and it was very disturbing but when I'm curious about is if anybody knows on this forum is there any correlation between my peripheral neuropathy and my optic neuropathy. Unfortunately I just feel dead and a lot of times my legs and my feet will cramp up at night so I have to stand up occasionally. Even my toes I changing the shape. I don't know what else to do. My neurologist is testing for toxins and heavy metal so we'll see what happens but it's probably going to end up being idiopathic. I'm happy to be alive but the quality of life has changed. Good luck on your neuropathy Journey.

demeter | @demeter | Jul 26 9:34am

In reply to @demeter "hi has anyone used machine called Regeneris" + (show)

@demeter I was told about this through a VA conference by a man who was so depressed with his neuropathy that he was ready to take his life. He said it saved his life. I am working hard to get the VA to order this for me however I think it's very expensive. Someone said it's like 5K.

John, Volunteer Mentor | @johnbishop | Jul 26 9:36am

In reply to @louellenc "Hi. I’m Lou Ellen. I’ve been having nerve pain, fatigue, exhaustion, vision troubles and other symptoms..." + (show)

Hello Lou Ellen @louellenc, Welcome to Connect. It sounds like you've had all of the normal tests, including a skin punch biopsy but they weren't able to find a diagnosis. I'm sure you are not alone and others with similar symptoms have struggled to get a diagnosis and treatment. You might find this related discussion helpful:
-- May have undiagnosed autoimmune disease:
https://connect.mayoclinic.org/discussion/may-have-undiagnosed-auto-immune-disease/
You mentioned your neurologist couldn't find anything and thinks it's anxiety. Have you thought about getting a second opinion from a specialist like a neuromuscular neurologist?

John, Volunteer Mentor | @johnbishop | Jul 26 10:05am

In reply to @demeter "hi has anyone used machine called Regeneris" + (show)

@demeter Their website shows a small study for diabetic neuropathy but not sure it will work for everyone - https://www.regenesismed.com/clinical-evidence/. It does appear to be a Pulsed Electromagnetic Fields (PEMF) device and there are other discussions on PEMF that you might find helpful - https://connect.mayoclinic.org/search/discussions/.

evb | @evb | Jul 26 11:11am

I believe I have been living with PN in my hands since I was about 19 years old. It may have started as a result of a traumatic experience at that time? It may have been because my kidneys were failing without my knowledge and which only came to light when I was diagnosed with end stage renal failure at age 51. My doctor said that the xray of my totally shrunken kidneys suggested that my kidneys had been failing since childhood! I had a kidney transplant 20 years ago which has been very successful but the PN still affects my right hand a lot of the time. I am presuming that it is PN. It has affected my whole life psychologically as It was dismissed as being "all in my head" when I originally went to my doctor in my early 20s. Reading some of the case histories here resonate very strongly with me . It has taken me a long time to investigate what my problem could be so thank you for the opportunity to tell part of my story.

ponchoxx | @ponchoxx | Jul 26 12:31pm

In reply to @johnbishop "Welcome @ponchoxx, Sorry to hear you haven't found much relief for your neuropathy symptoms. There are..." + (show)

@johnbishop thanks for the prompt reply, I believe circulation has a bearing on it, however more importantly is the lumbar vertebrae I have to check my back after radiation, the medicine for AFIB, Amidiorone is real toxic and one side effect is that cause Neuropathy, so it may have incremented mine, this year is been the year of illness, I’m not given up although at 79 feel like galloping into old age.

front | @front | Jul 26 1:33pm

Hi Collen: a couple of days ago I consulted with you on issue of leg cramps and swelling. You recommended a few options including neuropathy. I tried but my message didn't appear. Missing some steps?
Front

John, Volunteer Mentor | @johnbishop | Jul 26 5:10pm

In reply to @evb "I believe I have been living with PN in my hands since I was about 19..." + (show)

Hello @evb, Welcome to Connect. Sorry you've had to deal with the PN starting at such a young age. Connect is a great place to meet others dealing with similar symptoms and sharing experiences. There are many different discussions in the Neuropathy Support Group that you may find helpful. Here's a list with links to each of the discussions. You can scan through the list or search the support group for a specific topic you are looking for - https://connect.mayoclinic.org/group/neuropathy/.

If you are looking for different neuropathy resources, we have a discussion here - Knowledge is power: Add your helpful neuropathy resouces and links: https://connect.mayoclinic.org/discussion/neuropathy-101-knowledge-is-power/

What's the most difficult symptoms for you to manage?

shnancy | @shnancy | Jul 26 7:47pm

In reply to @sallymagint "Thank you Colleen and John, I'm hoping I can learn as much as possible about Neuropathy..." + (show)

@sallymagint

Thank you Colleen and John, I'm hoping I can learn as much as possible about Neuropathy and how others are living with and managing their symptoms effectively.
From my point of view the care and treatment provided by my medical team is likely to have more positive outcomes if have a positive approach and try to help myself as much as I can -I guess it's a team approach and I'm a vital player. It's not easy, in fact it's damn hard a lot of the time and some days I wonder how I'm going to get through it but I don't have any other option.
I have a numbee of medical conditions which leave me with a fair amount of neuropathy. I have altered sensations in most parts of my body affecting my sensitivity to temperature, pain, touch, taste, smell. My legs, arms and extremities have significant weakness and a degree of paralysis which may or may not be permanent. I'm in the process of undergoing treatment with neurosurgery planned in the not to distant future. It's hopeful surgery will reduce the risk of further permanent damage and then the focus will be on retraining/repairing the brain. There's no guarantees and it's still a long road to travel but I'm crossing my fingers I can reverse some of the damage.
Thank you so much for giving me the opportunity to talk about my situation. Although I haven't delved into it too much due to the complexity, it's helpful to chat about the neuropathy part of it.
I live in Australia and knowledge/experience amongst the medical profession about my conditions is limited. It has made it very tough and I've been confronted with a fair amount of ignorance. It is soul destroying when you know there is something wrong but you're made to feel it's in your head. But I'm not giving up, I can't give up and through perseverance I've found some amazing specialists who are familiar and experienced and are hopeful they can help me. And I want to raise as much awareness as I can. Awareness is power and power makes change. If less people experience the degree of emotional trauma like myself and others have faced simply by increasing education and knowledge, it can only be a win for all involved

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I suffer from Small fiber neuropathy pain that continues to worsen as time goes by...
I have had this problem for 4 years, and now need to use a walker.