Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

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

John, Volunteer Mentor | @johnbishop | Apr 2, 2023

In reply to @teddyjoe "I have been reading about LED treatment. Anyone know of case studies about this treatment? I..." + (show)

Welcome @teddyjoe, I have thought about one of the near infrared therapy saunas to see if it would help but I didn't get one, mostly due to cost. There are a couple of discussions you might find helpful.

-- Laser Therapy for Neuropathy: https://connect.mayoclinic.org/discussion/neuropathy-1/
-- Infrared Sauna Treatment for PN: https://connect.mayoclinic.org/discussion/infrared-sauna-treatment-for-pn/.

This clinical trial was terminated due to unable to enroll enough patients - Near Infrared Light for the Treatment of Painful Peripheral Neuropathy: https://clinicaltrials.gov/ct2/show/NCT00125268.

You can search for other clinical trials here - https://clinicaltrials.gov/. Can you share what LED treatment you were reading about?

cls1 | @cls1 | Apr 2, 2023

I have it from my Dad. The bottoms of my feet feel like they are cardboard. I’m seeing a neurologist who says the myelin around my nerves are shredding causing the pain and numbness. Going for a brain mri next and lots of blood tests and then I’ll get a definite diagnosis and what to do for it.

luvpsu10 | @luvpsu10 | Apr 2, 2023

In reply to @johnbishop "@luvpsu10, I know you're not alone with your feeling about starting new medications when it comes..." + (show)

I have not seen. Thanks for letting me know!

adejuliannie | @adejuliannie | Apr 3, 2023

In reply to @luvpsu10 "I am non diabetic and have Idiopathic Chronic Axonal Polyneuropathy. I am currently using Medical Marijuana..." + (show)

I take Lyrica an Pregabalin an haven't had any side affects

cantab | @cantab | Apr 3, 2023

In reply to @luvpsu10 "I am non diabetic and have Idiopathic Chronic Axonal Polyneuropathy. I am currently using Medical Marijuana..." + (show)

Which kind of Medical Marijuana capsules?
I have a card and would be interested in your using them.

luvpsu10 | @luvpsu10 | Apr 3, 2023

Thanks for asking. I use a Nano technology capsule that is 2.5 mg of CBD and 2.5 mg of THC daily. On this bad days, I use a 5 mg CBD/THC capsule. The nano capsule act within 30 minutes and last up to 8 hours. Oil based capsules do not work as good for me and harsher on my stomach as well. Nano capsules are water based.

luvpsu10 | @luvpsu10 | Apr 3, 2023

In reply to @cantab "Which kind of Medical Marijuana capsules? I have a card and would be interested in your..." + (show)

Sorry that the response did not directly to you. My response is in the thread. Hope it is helpful.

cantab | @cantab | Apr 3, 2023

In reply to @luvpsu10 "Sorry that the response did not directly to you. My response is in the thread. Hope..." + (show)

Thanks! I got it, didn't see it thee 1st time.

charlie807 | @charlie807 | Apr 3, 2023

In reply to @johnbishop "Hello @user_ch98d0b5c -- I read from your earlier post that you do not know what the..." + (show)

I'm Charlotte @charlie807, I'm a patient with neuropathy without diabetes. Mine was calll didn't check my nerves after surgery. I was in just as much pain after surgery plus my right leg was numb. I have pain in my feet sometimes sometimes my feet are so cold nothing warms them, then sometimes they are so hot I can't warm them. Only at night ! I cannot wear socks they feel as if my feet are on fire. I have one pair that's fine. Shoes I have one pair of shoes I can wear without feeling like my foot will break. I'm losing the feeling in both feet so balance is a big problem. My pain doctors tell me all research is being done for diabetics. This is very hard, very scary and the pain is awful and nothing really helps. Very depressing!

John, Volunteer Mentor | @johnbishop | Apr 3, 2023

In reply to @charlie807 "I'm Charlotte @charlie807, I'm a patient with neuropathy without diabetes. Mine was calll didn't check my..." + (show)

Hello Charlotte @charlie807, Welcome to Connect. You are right, it is scary and difficult when you are in pain and nothing seems to help. Unrelenting pain, cold and hot feet along with many other awful symptoms is something that a lot of Connect members in the Neuropathy Support Group can relate to and know what you are feeling. The best thing you can do to help yourself is to learn as much as you can about your condition and what treatments are available that might provide some relief. The following neuropathy sites are really helpful for learning more:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.

It sounds like your neuropathy started following a surgery? Do you mind sharing a little more about your diagnosis?