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.

@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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@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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@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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@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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@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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If there is a supplement that is on top of the "hits" chart of supplements for neuropathy, it is definitely ALA and that too R-ALA. BTW, I hear that in Europe ALA is the standard medical treatment for PN - administered intrevenously. I have tried 7-8 different supplements so far - most of them appear to help for a while and then they lose their effect. I had taken ALA 5 years ago and it was quite helpful in mitigating the pins and needles. Then it stopped being effective. I gave ALA a few year break and now trying out again (600 mg once a day). I have not seen any impact so far. It would also be fair to point out that most references for use of ALA are for diabetic neuropathy which is not my case. It would be nice if there was credible research on supplements for PN. I have seen any.

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@pkagarwal

If there is a supplement that is on top of the "hits" chart of supplements for neuropathy, it is definitely ALA and that too R-ALA. BTW, I hear that in Europe ALA is the standard medical treatment for PN - administered intrevenously. I have tried 7-8 different supplements so far - most of them appear to help for a while and then they lose their effect. I had taken ALA 5 years ago and it was quite helpful in mitigating the pins and needles. Then it stopped being effective. I gave ALA a few year break and now trying out again (600 mg once a day). I have not seen any impact so far. It would also be fair to point out that most references for use of ALA are for diabetic neuropathy which is not my case. It would be nice if there was credible research on supplements for PN. I have seen any.

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Well it’s worth a try at this point my quality of life is in a tail spin. I am just getting started on the site but am really impressed. I really don’t know how to navigate any support group tech Mgt. I am very much old school with no computer skills at all. I guess I will figure it out as I go.

Thanks again

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Wow! straightway22, I today got my 1st bottle I ordered a couple days ago after reading this thread and wanting the benefits. One question I have about turmeric supplement included. Hank, @jesfactsmon, before I take this Nuturna supplement, I'm researching this vs some of my personal health issues. Hope I can take it and it helps, as this neuropathy stuff is getting worse and making my walking harder. Tks as always....Blessings, elizabeth

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@catharbert

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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Hi Catcando, I take them both and feel they help diminish my pain as I only take gabapentin at night, the RAla 3x day and acetyl l carnitine 2x day 300 mg. each time. Helen

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@artscaping

Hi there John,
Idiopathic Small fiber neuropathy.... my exact diagnosis on top of Chronic Myofasial Pain Syndrome. Kind of gets you coming and going. Pain release massage therapy works wonders for me. This isn't deep tissue but gentle pressure that slowly pushes the pain out. I also find that self guided meditation gets the mind on the same page, focused on pain release. Medicating in the morning to stay ahead of the pain is best for me. Compounded creams work to reduce the needles in hands and wrists. I just read an article in the WSJ of July 18 which reports on the progress being made using Virtual Reality technology to reduce pain. I would like to find a trial and participate. My ace in the hole is a loving supportive family and learning how to use MM appropriately. Never combine alcohol of any kind with MM. Oh....and my mindfulness mantra....right now this is the way it is and I need to rest my mind, spirit, and body. Then I exit whatever situation I find myself in and do just that for 15 minutes or so. What else are you doing to find joy and wonderful moments in every day? By the way, I do not use opioids or NSAIDs or any conventional medications. I also saw and worked with a nutritionist to make sure I introduce sufficent protein along with my lean and green choices.

Low barometric pressure that appears with storms or weather cells sends me to bed to wait it out. Do you notice increased pain as a result of pressure changes? Please share any other "learnings" that you have encountered.

Thanks....Chris

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I can spot a weather change coming a day prior, the pain increases to a unbearable level tell the weather system passes! Maybe I should apply for a job at the Weather Service!

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