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Member Neuropathy Journey Stories: What's Yours?
This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.
— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?
Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?
What's your neuropathy story?
Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.
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Hello @cynbell, I would like to add my welcome along with @blessedsista24 and others. You are not alone and hopefully can find something that helps provide some relief for the neuropathy pain. While you wait for others to respond, you might find it helpful to look through the other discussions on Connect for what helps with neuropathy. Here's a link that lists the different discussions and member comments - https://connect.mayoclinic.org/search/discussions/?search=what%20helps%20with%20neuropathy.
You might also find the Foundation for Peripheral Neuropathy helpful to learn more about the condition and what helps - https://www.foundationforpn.org/living-well/
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6 ReactionsThank you so much! I will check that out and see if there's possibly something I haven't tried. I'm sure there is.
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2 ReactionsSo if you had a normal EMG-NCS how do you know if you have PN?
Hi, I don't know if I have PN, per se, so that is part of the problem I face (with no clear diagnosis)...
Hi
I was not medically diagnosed for many years many doctors suggested volunteer work to get my brain to think about something else. At the time I was helping homeless among other things which did not get my brain to "forget" about my constant burning feet which has now crept up to my calves. I did try Botox shots in my feet and legs cramps but alas it did nothing it was not a pleasant experience! Tried Ketamine infusions twice to no relief. Sorry I don't have any hope for any relief but some people find solace in knowing they are not alone on their journey through this painful maze. I commend you for pushing forward for answers have you any nerve conduction tests? That did help the doctors come to an agreement on idiopathic neuropathy. I decided ice cream is the best medicine!!
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2 ReactionsHi, I'm Angela. I'm fairly certain I've had neuropathy since I was in my early 20's ( burning feet, big toes were numb) but was told that it was due to bunion surgeries and then getting pregnant shortly after that. Fast forward to 41, I finally saw a neurologist and he has basically confirmed that it's neuropathy and I am terrified. I had a period of time that I was dealing with some mental health issues and gained A LOT of weight being on antidepressants. Two years ago I finally decided to take myself off after I really didn't like how I felt and was diagnosed as Type II diabetic in Oct 2024 (which I still think was wrong since I have never had a blood sugar even close to what was in the fasting lab). I've lost about 80 pounds since that Oct diagnosis and my labs are perfect. Despite that I've seen more symptoms that have now moved my fingers to go along my feet that have been numb/burning/tingling for years.
I have an EMG scheduled for June and regularly see a chiropractor to which both the chiro and neurologist have said there are very few options for me as this is likely hereditary due to the age this started (and I was in amazing health at that point) and several relatives having it. I will not go back on antidepressants as I'm a firm believer that those extended my mental health issues but will start taking ALA. I can live with the pain that I'm in while it's not fun but I'm so scared I will completely lose my mobility. I am still young as all the women in my family have lived past 100 and my daily workouts have significantly improved my mental health. I have a young daughter that I need to be active for and am also very nervous that I will pass this along to her. I really try to be upbeat but after all I've battled through I'm very discouraged I could lose the lifestyle I've fought so hard to get back to.
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3 ReactionsHi Angela,
First, sorry for all you're going through and hope you'll get more answers. From reading about hereditary neuropathy, there are specific tests that need to be performed including genetic and family history check. The EMG will confirm your condition but I am not sure how much it will tell in reference to heredity. i just had an EMG/nerve conduction test last month which confirmed my condition and added cervical and lumbar radiculopathy. I just hope you have a knowledgeable and compassionate neurologist to help you through this. Please do also focus on the psychological aspect of your condition and surround yourself with a good positive support group. It is really vital.
Hang in there and I wish you the very best. Take care.
gus
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1 ReactionHi Angela @amh08, I would like to add my welcome along with @gus0557 and others. I am so glad that you found this site and connect with others with neuropathy. So many of us share the same concerns as yourself and it's difficult to deal with in the early years, especially at your young age and with a young daughter. What has helped a lot of us is learning as much as you can about the condition and what treatments are available that may provide some relief. What works for one of us may or may not work for others.
I think it's fantastic that you have lost 80 pounds since your diagnosis and have good labs. Losing weight was key for me also. Now at age 82, I just focus on staying mobile and exercising daily. I shared my neuropathy journey along with other members in another discussion here - https://connect.mayoclinic.org/comment/310341/.
If you haven't already found the Foundation for Peripheral Neuropathy website, it's a great place to learn more about neuropathy and what helps - https://www.foundationforpn.org/living-well/. You also might want to scan through other discussions in the Neuropathy Support Group to find more answers you have - https://connect.mayoclinic.org/group/neuropathy/.
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2 Reactions⭐️HELP⭐️ Has anyone had any success with “ NERVGUARD PREMIUM” or is this just another SCAM?
Thank you for your help!!!
Welcome, Angela (@amh08)! So much of what you describe recalls for me the early days of my struggling to make a place for neuropathy in my life. Like so many of us, I found myself reaching out to others (doctors, books, YouTube vids), crying in each instance, 'Help me! Please, won't you help me?' What I found terrifying (and it was terrifying at first) was not only was no one drawing closer to help me, they were stepping back, receding, slowly fading into the background––at least that was the sensation. It wasn't until I realized that the reason no one was stepping forward was because they had nothing to offer and it was troubling them as much as it was troubling me. It was at that moment (about two years ago) when I realized that it made far less sense to be reaching out for help but much more sense to be reaching within. The frame of mind I put myself in nowadays when I go to see one of my doctors is not that of someone pleading for help but of someone saying to the doctor, 'I'm working as best I can to manage my neuropathy. I know you don't have a magic cure-all pill that you can give me, but I'd welcome any suggestions you might have. The way I look at it, you and I are teammates in this neuropathy business.' It was at that point that I realized I can survive my neuropathy. I can't make it go away; it's mine for keeps. But I can survive it, and live my best possible life in spite of it.
I wish you mountains of success, Angela, in dealing with your neuropathy!
Cheers!
Ray (@ray666)
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