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 athenalee @athenalee

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.

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@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.

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Profile picture for poppsy1 @poppsy1

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.

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@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

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Profile picture for poppsy1 @poppsy1

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.

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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

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Profile picture for John, Volunteer Mentor @johnbishop

@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.

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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.

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Profile picture for poppsy1 @poppsy1

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.

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@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

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Profile picture for John, Volunteer Mentor @johnbishop

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?

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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.

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Profile picture for pkagarwal @pkagarwal

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.

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I'm not sure there is what you can call a typical dosage but I can share I take 500 mg of Acetyl-L-Carnitine along with 100 mcg Vitamin K2 twice daily (morning and evening) along with 600 mg of na-R-ALA morning and evening and the other supplements included in the Protocol 525 - https://theprotocol525.com/wp-content/uploads/2020/09/Instructions_Introduction.pdf.

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Profile picture for straightway22 @straightway22

The name of the supplement is Nuturna Maximum Strength NEUROPATHY Support Formula

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Thank you very much for the information. Do you know if anyone has had any good or negative results or feedback?

Rod

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Profile picture for pkagarwal @pkagarwal

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.

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Does the R-ALA 600 mg you currently take help with the pain at all? I am taking 300 mg gabapentin 2-3 x a day plus 1/2 50 mg tablet of tramadol that mostly handles the pain. I want to try the ALA and possibly the Acetyl L-carnitine but would like to hear how it works for you. I don't have diabetes. I think my neuropathy is caused by post treatment Lyme disease.

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Profile picture for John, Volunteer Mentor @johnbishop

I'm not sure there is what you can call a typical dosage but I can share I take 500 mg of Acetyl-L-Carnitine along with 100 mcg Vitamin K2 twice daily (morning and evening) along with 600 mg of na-R-ALA morning and evening and the other supplements included in the Protocol 525 - https://theprotocol525.com/wp-content/uploads/2020/09/Instructions_Introduction.pdf.

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Hi John,
What is your opinion of the protocol 525? I was considering trying it but it’s just kind of uncertain buying an unknown brand of vitamins?

Thank you

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