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.

Profile picture for 1952healthyneuro @1952healthyneuro

I am fortunate that I don’t have a lot of pain. I do have some pain in my left ankle and heal at night when I am in bed. My podiatrist prescribed gabapentin for me, and I was not able to tolerate that at all. Made me feel out of it and also dizzy. I will be starting physical therapy next week for help with balancing exercises and also dry needling. Any suggestions?

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Welcome @1952healthyneuro, Hoping you get lots of good information from your physical therapist next week that's tailored to your specific needs. The Foundation for Peripheral Neuropathy has a lot of great information including these two that I found this morning:
-- Tailored workouts or PT sessions may help:
https://www.foundationforpn.org/lifestyles/exercise-physical-therapy/
-- Brain-Based Balance Exercises:
https://www.foundationforpn.org/brain-based-balance-exercises/
Have you had any injuries to the left ankle?

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Profile picture for 1952healthyneuro @1952healthyneuro

My neuropathy has recently gotten worse. My walking has become unsteady and I am having problems with balance. I’m not picking up my feet the way I should. I am starting physical therapy soon. They will be working with me on balancing exercises and dry needling. I also recently ordered Alphalipoic acid which I should be receiving very soon. I’m hoping I can tolerate that and then it will help me. I would really appreciate any thing you can share about remedies you have tried that are working. Also, does anyone have any positive results from grounding mats or grounding sheets?

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There is a discussion from earlier this year on grounding mats that if you want to read through it - https://connect.mayoclinic.org/discussion/grounding-well-mats/

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Alpha Lipoid Acid from Amazon, or wherever. Don't cost much. I take 600mg twice a day. It has helped greatly with the burning. Don't have any pain

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Profile picture for John, Volunteer Mentor @johnbishop

@wenner, Your password should be OK if you are able to post in a discussion as you cannot do that unless you are signed into Connect. If you click on your profile icon at the top of any Connect page, it will take you to your profile page. Then you can select Settings and Preferences to change your settings for notifications. You can also click on the Bell icon at the top right of any page and it should show your notifications. If you still are having problems with notifications, you can use the contact a moderator form here - https://connect.mayoclinic.org/contact-a-community-moderator/.

You can get to the form on any Connect page by going to the left footer area at the bottom of a page and clicking Contact Mayo Clinic Connect.

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Thank you, I really appreciate what you have done for me in this email of
yours. I have written it all down in case I loose this email. Thanks again
God bless you @wenner

Wendy Wehner
0403 198 045

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Profile picture for John, Volunteer Mentor @johnbishop

Sorry to hear that it's gotten worse but I'm glad that you are not giving up. Positive attitude is a plus when dealing with the neuropathy monster. Have you tried any complementary or alternative therapies? - https://www.foundationforpn.org/therapies/

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Yes every thing you can imagine, I have kept a diary. Drugs started early 2000.
Doctors have no idea where the neuropathy has come from I've just linked them. Am I able to say name of drugs? @wenner

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I am so glad I have found this group. I was with a RLS group for many years. I know how it helps to share our stories. I am old school and appreciate the help I have been given today.

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Profile picture for wenner @wenner

Yes every thing you can imagine, I have kept a diary. Drugs started early 2000.
Doctors have no idea where the neuropathy has come from I've just linked them. Am I able to say name of drugs? @wenner

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It’s definitely OK to say the name of the medications or drugs you’ve taken for treatments.

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Profile picture for John, Volunteer Mentor @johnbishop

@wenner, Your password should be OK if you are able to post in a discussion as you cannot do that unless you are signed into Connect. If you click on your profile icon at the top of any Connect page, it will take you to your profile page. Then you can select Settings and Preferences to change your settings for notifications. You can also click on the Bell icon at the top right of any page and it should show your notifications. If you still are having problems with notifications, you can use the contact a moderator form here - https://connect.mayoclinic.org/contact-a-community-moderator/.

You can get to the form on any Connect page by going to the left footer area at the bottom of a page and clicking Contact Mayo Clinic Connect.

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John I thought you had fixed my p/w as it worked like a beauty last night... and yes I even did some posting.
Cheers and thanks @wenner

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With the diagnosis of idiopathic axonal polyperipheral neuropathy my doctor has not given me any help as to how we can manage these symptoms other than we will do annual EMG's to see how things are progressing or worsening. It seems that there should be something that could be done for the symptoms that I have, but I have been left very discouraged the comments from my doctor. When he first saw me 18 months ago, he said that I would likely be in a wheelchair within 10 years. I am looking for some kind of support out there rather than just let's wait and see how bad it gets for you.p

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Profile picture for wenner @wenner

I have stage 3 peripheral nueropathy both legs, this is the awful pain part of it 24/7. I have come to the end of the line Specialist Doctors wise, my GP is still with me trying hard to get the pain at least halved. I have been to a Neurologist, who referred me to Synapse Neurology, who sent me to a Haemotologist. I have had all their tests and it is still not known what has caused this. So I am reading all the comment, so far have not been able to get into my notifications, seems they don't like my pass word, but I'll keep trying. @wenner

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what tests were performed to arrive at your analysis of the condition?

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