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Profile picture for Colleen Young, Connect Director
Moderator

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.

Profile picture for pkagarwal
pkagarwal | @pkagarwal | Mar 9, 2021

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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Profile picture for rtvin53
rtvin53 | @rtvin53 | Mar 9, 2021
In reply to @pkagarwal "If there is a supplement that is on top of the "hits" chart of supplements for..." + (show)
Profile picture for pkagarwal @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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Profile picture for ess77 - Elizabeth
ess77 - Elizabeth | @ess77 | Mar 9, 2021

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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helennicola | @helennicola | Mar 9, 2021
In reply to @catharbert "Does the R-ALA 600 mg you currently take help with the pain at all? I am..." + (show)
Profile picture for Catcando @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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bill5 | @bill5 | Mar 9, 2021
In reply to @artscaping "Hi there John, Idiopathic Small fiber neuropathy.... my exact diagnosis on top of Chronic Myofasial Pain..." + (show)
Profile picture for Chris, Alumni Mentor @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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steeldove | @steeldove | Mar 9, 2021
In reply to @avmcbellar "@LeeAase Hi Lee, 36 hours does sound like a long time. Good to know, thank you...." + (show)
Profile picture for avmcbellar @avmcbellar

@LeeAase Hi Lee, 36 hours does sound like a long time. Good to know, thank you. I never had a bad batch. It takes practice to perfect the method. When I made my yogurt in a gallon sized bowl with a lid, I used the warmth of my garage while the sun was still out. After about 8 hours the curdled milk was ready to strain through a cheese cloth. So within a day my yogurt was ready. Luckily, I never had left the milk over night. I was afraid for it to turn into cheese which I do not like at all. As I was growing up, my dad made cheese from scratch using the milk from our goats. I disliked the smell. Thanks again Lee. Do you grow bacteria for bread too? Toni

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=46rom The New York Times:

Women Report Worse Side Effects After a Covid Vaccine

Men and women tend to respond differently to many kinds of vaccines. =
That=E2=80=99s probably because of a mix of factors, including hormones, =
genes and the dosing of the shots.

=
https://www.nytimes.com/2021/03/08/health/vaccine-side-effects-women-men.h=
tml?smid=3Dem-share=

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Profile picture for ess77 - Elizabeth
ess77 - Elizabeth | @ess77 | Mar 9, 2021
In reply to @johnbishop "@athenalee, Just from a quick glance the Nuturna Neuropathy Support Formula contains a lot of the..." + (show)
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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@johnbishop, Thanks, again. elizabeth

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Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2021
In reply to @rtvin53 "Hi John, What is your opinion of the protocol 525? I was considering trying it but..." + (show)
Profile picture for rtvin53 @rtvin53

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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@rtvin53, I have been using the Protocol since 2016 when we just had a list of the best quality of the supplements and vitamins that the groups research put together. It was a lot more pills and it was continual ordering since the supply ran out on different schedules. The groups leader and some of the members found a local pharmaceutical company that could combine the same quality of supplements and vitamins into fewer pills which made our ordering process a little easier with the side benefit of being easier to swallow less pills. I don't have a vested interest in the groups product but it has helped myself and others.

While I do not have neuropathic pain with my small fiber PN, I have the numbness and it has seemed to slowed or stopped the progression of neuropathy in my legs and made it a little better. After 2 months of taking the protocol, my numbness went from just below the knee to just above my ankles which is not a whole lot but it's something my neurologist said was going to get worse not stay the same or show improvement. Others in the group with different types of neuropathy and associated pain have been able to taper off of their pain drugs after being on the protocol for a few months.

I don't think I would just blind order the product. Instead I would join the Facebook group, read their welcome page for new members and then search through the group and read the success stories from other members. In fact they encourage new members to do their own searching. It's easy to find other members success stories by searching the group using #theprotocolworks. I would also download and print a copy of the ingredients for the Protocol 525 and share it with your doctor or neurologist to make sure there are no conflicts with anything you may be taking like blood thinners. Here's the link from their website for the information to share with your doctor:
https://theprotocol525.com/wp-content/uploads/2020/09/Instructions_Introduction.pdf They also have a link to their Facebook group on the website here - https://theprotocol525.com/. Just click the Join for FREE Support button on the main page.

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Profile picture for rtvin53
rtvin53 | @rtvin53 | Mar 10, 2021

Hi Colleen,

I was wondering if there is any kind of tutorial to help me navigate this support group site. I really have no computer skills and basically just go on the internet and make calls with my phone. Each time I go to this site I seem to get lost in how to determine which support group is which etc?

Sorry, I really do enjoy reading different postings but don’t know how to come back to them once leaving the site.

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1 reply
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2021
In reply to @rtvin53 "Hi Colleen, I was wondering if there is any kind of tutorial to help me navigate..." + (show)
Profile picture for rtvin53 @rtvin53

Hi Colleen,

I was wondering if there is any kind of tutorial to help me navigate this support group site. I really have no computer skills and basically just go on the internet and make calls with my phone. Each time I go to this site I seem to get lost in how to determine which support group is which etc?

Sorry, I really do enjoy reading different postings but don’t know how to come back to them once leaving the site.

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@rtvin53, I thought I would jump in for @colleenyoung and let you know about this discussion that may answer all of your questions. This should help get you started and if you have any questions, just post them in the discussion.

[TIP] How to Use Connect: Step-by-step Instructions: https://connect.mayoclinic.org/discussion/tip-how-to-use-connect-step-by-step-instructions/

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