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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.

avmcbellar | @avmcbellar | Sep 14, 2020
In reply to @campana "Thank you for your reply. Yes I was diagnosed 2019 with neuropathy. Numbness,tingling & burning in..." + (show)
@campana

Thank you for your reply. Yes I was diagnosed 2019 with neuropathy. Numbness,tingling & burning in feet and hands. Presently taking acupuncture (6 sessions) which is giving me slight relief. Also taking supplements and Alpha Lipoic Acid 600 mg.
Do you have any experience with Osito foot stimulator with tens unit? Lilly

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Hi @campana I also take ALA 600 mg daily. Have you experienced any stomach burning? How do you take your ALA capsule(s)? Toni

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bustrbrwn22 | @bustrbrwn22 | Sep 14, 2020

I am taking 1 600 mg 2x day ALA without any results. Should I up the dosage or does it take months to start to work?

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2 replies
bustrbrwn22 | @bustrbrwn22 | Sep 14, 2020

My pain is diminished noticeably when I use my TENS on my feet. Some nights I have to decide if I’m going to use TENS on feet or hammie/glute sciatica. Then there’s always tripping all
Over the cords if you have to use the restroom. I tripped all over the other night doing that.

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bustrbrwn22 | @bustrbrwn22 | Sep 14, 2020
In reply to @campana "Thank you for your reply. Yes I was diagnosed 2019 with neuropathy. Numbness,tingling & burning in..." + (show)
@campana

Thank you for your reply. Yes I was diagnosed 2019 with neuropathy. Numbness,tingling & burning in feet and hands. Presently taking acupuncture (6 sessions) which is giving me slight relief. Also taking supplements and Alpha Lipoic Acid 600 mg.
Do you have any experience with Osito foot stimulator with tens unit? Lilly

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Do you have to be standing or sitting to use the Osito stimulator?

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 15, 2020
In reply to @avmcbellar "John, @johnbishop. That is another great idea to add a satisfying topping to yogurt. I have..." + (show)
@avmcbellar

John, @johnbishop. That is another great idea to add a satisfying topping to yogurt. I have plenty of left over almond flour from the keto diet I did a few months before. I am back to a low carb regular diet. Any ideas for using the almond flour for desserts? Toni

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Toni @avmcbellar, My wife is the dessert specialist in the house but I'm not sure she's used almond flour for desserts. I had her try it for making biscuits a few years ago and they were not too bad. I've had organic almond flour crackers that I like with chili and soups. I did see some recipes here that looked tasty - https://www.thekitchn.com/7-ways-to-bake-with-almond-flour-and-almond-meal-243264

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1 reply
avmcbellar | @avmcbellar | Sep 15, 2020
In reply to @bustrbrwn22 "I am taking 1 600 mg 2x day ALA without any results. Should I up the..." + (show)
@bustrbrwn22

I am taking 1 600 mg 2x day ALA without any results. Should I up the dosage or does it take months to start to work?

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Hi @bustrbrwn22 check with your manufacturer. Mine said to not exceed 600mg in a day. I see other product available by other manufacturers that do exceed 600mg. In my research for neuropathy, I had read the 600mg dose was recommended. I had taken it until the bottle was completed, a four month monthly. I didn’t realized how much it had help until I stopped taking it. Although ALA does not provide a cure for neuropathy, it does decrease the symptom of burning in my limbs particularly my calf and foot. I believe it helps to take the ALC(Acetyl-L- Carnitine) also shortly after the ALA. I started the ALC a few weeks ago. I take mine in the mornings because it can interfere with sleep. I have experimented and found methods that have decreased the burning in my stomach caused by the ALA. Good luck.Toni

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helennicola | @helennicola | Sep 15, 2020
In reply to @bustrbrwn22 "I am taking 1 600 mg 2x day ALA without any results. Should I up the..." + (show)
@bustrbrwn22

I am taking 1 600 mg 2x day ALA without any results. Should I up the dosage or does it take months to start to work?

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Hi Bustrbrwn, I have been taking ALA 600 mg. 2x/day for over 2 yrs. plus the ALC 500mg. 2x/day and am sure it helps my symptoms. Are you taking the R-Ala which is better absorbed? Helen

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1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 15, 2020
In reply to @helennicola "Hi Bustrbrwn, I have been taking ALA 600 mg. 2x/day for over 2 yrs. plus the..." + (show)
@helennicola

Hi Bustrbrwn, I have been taking ALA 600 mg. 2x/day for over 2 yrs. plus the ALC 500mg. 2x/day and am sure it helps my symptoms. Are you taking the R-Ala which is better absorbed? Helen

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@helennicola Ah! What is the “r” for in ALA? Thanks for your guidance!!

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1 reply
wisfloj | @wisfloj | Sep 15, 2020

From my research, ALA has an S and an R component, the R is the active one. I take 300 mg. of R-ALA

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1 reply
avmcbellar | @avmcbellar | Sep 15, 2020
In reply to @wisfloj "From my research, ALA has an S and an R component, the R is the active..." + (show)
@wisfloj

From my research, ALA has an S and an R component, the R is the active one. I take 300 mg. of R-ALA

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@wisfloj Hi! I take the R-ALA as well. Any problems? I have tried the 300mg and 600mg but find the acid gives me a burning sensation in my stomach. Taking it with low acid foods seems to help. Thanks for your input! Toni

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