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.

athenalee | @athenalee | Mar 9, 2021

In reply to @straightway22 "The name of the supplement is Nuturna Maximum Strength NEUROPATHY Support Formula" + (show)

Thank you for sharing this. Is it different than the protocol 525? I’m new to having neuropathy issues, so trying to explore what might be best for me and not interact with anti rejection meds...which so many supplements and drugs do.

poppsy1 | @poppsy1 | Mar 9, 2021

im 69 yr old female Have progressive body pains throught ncluding private parts It has increased last few months Live on my own and to be honest I'm scared. Dr given me pain medication that doesn't help at all ive been treated as a neurotic woman which of which im not. this attitude doesn't help my condition I could scream with the pain every day. I need them to investigate my condition but fear its to late. Im normally a very possotive but this cronich condition has diminished any form of positivity . I cry for help every day sorry to bee morbid but its how I feel.

John, Volunteer Mentor | @johnbishop | Mar 9, 2021

In reply to @rtvin53 "Hello All, I’m just responding to this group. I have watched the posts and learning a..." + (show)

Hello Rod @rtvin53, I see you have been a member for a few months but this is your first post so I would like to welcome you to Connect. I'm not sure this is the information you are looking for but most over the counter Alpha Lipoic Acid brands contain both the synthetic (S- ALA) and the active (R-ALA). The R-form of alpha-lipoic acid is the active, natural form. The S-form occurs when alpha lipoic acid is synthetically manufactured, creating both the S-form and the active R-form. If the label doesn't specify R-ALA, then it more than likely is part S-ALA and not as effective for treatment. Here are some good references that provide more information on ALA.

- Alpha Lipoic Acid: http://lpi.oregonstate.edu/mic/dietary-factors/lipoic-acid
- Different Forms of Lipoic Acid: What You Need to Know: https://geronova.com/consumers/different-forms-of-lipoic-acid/
- Diabetic neuropathy: Can dietary supplements help?: https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/in-depth/diabetic-neuropathy-and-dietary-supplements/art-20095406

You might also be interested in the following discussions to learn what others have shared:
- Supplement recommendations: What can help neuropathy?: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/
- Diabetic Neuropathy progressing?: https://connect.mayoclinic.org/discussion/diabetic-neuropathy-progressing/
- Have you tried the new Protocol 525 product for neuropathy relief?: https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

Are you currently taking any supplements to help with your diabetic neuropathy?

John, Volunteer Mentor | @johnbishop | Mar 9, 2021

In reply to @poppsy1 "im 69 yr old female Have progressive body pains throught ncluding private parts It has increased..." + (show)

Hello @poppsy1, Welcome to Connect. I'm know it's hard when you feel like the doctors aren't listening to you or are ignoring you and it must be especially difficult living on your own. Have you been diagnosed with neuropathy? Are you able to share a little more about you diagnosis and symptoms?

John, Volunteer Mentor | @johnbishop | Mar 9, 2021

In reply to @athenalee "Thank you for sharing this. Is it different than the protocol 525? I’m new to having..." + (show)

@athenalee, Just from a quick glance the Nuturna Neuropathy Support Formula contains a lot of the same supplements as the Protocol 525 but they don't list how much with the exception of 600 mg ALA and they do not specify ALA, S-ALA or na-R-ALA. The Protocol 525 na-R-ALA supplement is a morning dose of 2 capsules and evening dose of 2 capsules for 1200 mg. The other difference that would bother me is B6 that the Nuturna proprietary blend contains. That is because unless you are deficient in B6 it's the one that can make your neuropathy worse (in my non medical opinion).

- B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

No matter what type of supplement is used, I would run it by my doctor or pharmacist before using it.

artist01 | @artist01 | Mar 9, 2021

In reply to @poppsy1 "im 69 yr old female Have progressive body pains throught ncluding private parts It has increased..." + (show)

@poppsy1 Oh my goodness, I wish I could help you with a good answer. Perhaps you should ask for a specialist referral by this doctor you have, who considers you neurotic (which of course you're NOT). It's totally unacceptable for your doctor to think of you in that way. Can you ask for a second opinion by another doctor? Or, change doctors? Warm regards, Laurie

jjheying | @jjheying | Mar 9, 2021

In reply to @poppsy1 "im 69 yr old female Have progressive body pains throught ncluding private parts It has increased..." + (show)

I am right there with you. I feel as though people don't believe me. That I am making it up to get out of working.... I would give anything to change bodies. I would love to be able to function without pain or doped up on meds

athenalee | @athenalee | Mar 9, 2021

In reply to @johnbishop "@athenalee, Just from a quick glance the Nuturna Neuropathy Support Formula contains a lot of the..." + (show)

Thank you John! You are a wealth of information. I’m just doing research right now in preparation for my upcoming neurologist visit. I want to also be prepared with what ingredients the supplement formulas contain due to drug interactions. I would certainly rather try natural remedies first before any new prescription medications. I’ve been taking a low dose of Neurontin/gabapentin for about 1.5 years for liver pain, which I’ve increased to 200-300 mgs at night, as it certainly helps with the pain and discomfort in my legs and feet. But, I know it’s not healthy and certainly doesn’t help to slow the neuropathy.

joybringer1 | @joybringer1 | Mar 9, 2021

In reply to @poppsy1 "im 69 yr old female Have progressive body pains throught ncluding private parts It has increased..." + (show)

@poppsy1, You have my sympathy for the medical issues facing you. Please consider going to a doctor who will listen to you and give you more than pain pills. A good doctor can refer you to specialists. Sometimes pain pills just won't work. You may have more than one issue facing you, but please locate a different doctor who is willing to help you. Best wishes, @joybringer1

pkagarwal | @pkagarwal | Mar 9, 2021

In reply to @johnbishop "Hello Rod @rtvin53, I see you have been a member for a few months but this..." + (show)

To start, my apolgies for this question because it has probably been answered many times bofore. I would like to try acetyl l carnitine for my night time pins and needles in my feet due to non diabetic peripheral neuropathy ( I take R-ALA 600 mg at present). Any wisdom on this and what is a typical dosage? It is available in 500 mg, 1000 mg. Thanks in advance.