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.

@avmcbellar

@sunnyflower I didn’t notice until one day, after months of taking it, the capsule collapsed in my mouth. I took too long to drink water with it. I noticed the burning feeling was the same as with my stomach. No matter how much water I drank, I could not get that burning feeling to go away. Thankfully, I did not have GERD, the reflux disease, nor was the burning from the neuropathy. I even called the manufacturer with questions to get more information. At first, they tried to brush me off by telling me to call my physician. I was never asked any questions by them. I felt it was their product why should I contact my doctor! What would he know to do that I didn’t? Surprisingly, they began cooperating but gave me a weak suggestion to take it with food. Really? I gave up on them and started experimenting with the supplement on my own. I found a solution that best fits me. I take it with ALC and foods low in acid. Best of luck to you. Toni

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Another thing that helps when taking R-ALA if you have burning or stomach issues is to eat part of a banana. I take two 600 mg daily but when I first started it was more difficult due to stomach problems and I found out you do have to eat something and not take it on an empty stomach.

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@bustrbrwn22

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

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Bustrbrwn, if you google Ala you will find there are 2 forms, the R and the S. Some brands combine both and some are just 1 or the other. I recently read an in-depth article on the differences and the pros and cons of each. The brand I take combines the 2 but I also have the all R-Ala which I switch off to at times. I think the R is better since it is also more expensive. Helen

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@sunnyflower

Hi Toni, @wisfloj and everyone else, does anyone else have acid or heartburn or increase acid or heartburn on this supplement? I have been taking it and I think I do have increased heartburn / acid. Thank you so much! Warmest regards, Sunny flower

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Sunny, I have no problem but I do not take it on an empty stomach. Helen

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@helennicola

Bustrbrwn, if you google Ala you will find there are 2 forms, the R and the S. Some brands combine both and some are just 1 or the other. I recently read an in-depth article on the differences and the pros and cons of each. The brand I take combines the 2 but I also have the all R-Ala which I switch off to at times. I think the R is better since it is also more expensive. Helen

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@helennicola Thanks for putting all your work into researching the his. I should have done that.

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Testudo (John) update, I have a call into my GP, last talked to him about slight burning in toes. He thought it my be inflammation. Take Advil. The old proverbial take two aspirin and call me in the morning. I have also had some slight zings in my hands after strenuous use. As mentioned in my first post, Dr. Google points me toward peripheral neuropathy. I’ve also had some eye issues and I have an appointment with my eye practitioner on October 1. So I will try to impress upon my GP to refer me to a neurologist. At least I should be examined and tested for PN. I am not sure what the hallmark test is for a PN diagnosis? Also, and I don’t mean to be insensitive or disrespectful, but even with a diagnosis there seems to be very little if anything that can be done from what I’ve read here. All the meds that have been mentioned don’t seem to do any good and have terrible side effects. I am cold turkey on the sugar and carbs with my 115 mg sugar Pre-diabetes with overhauled diet and strenuous biking and exercise. And about pain, at no time have I considered to be in “pain”. The “burning” in my feet is more of a distraction when lying in bed, or really only noticeable at that time. Last night, I woke like I always do for a trip to the porcelain palace, I felt a little numbness and tingly in my left foot. But after moving it around a bit, it went back to normal. The word progression is a scary one. I know there is no “reversal” but I hope to limit and slow progression. John

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@sunnyflower

Hi Toni, @wisfloj and everyone else, does anyone else have acid or heartburn or increase acid or heartburn on this supplement? I have been taking it and I think I do have increased heartburn / acid. Thank you so much! Warmest regards, Sunny flower

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@sunnyflower Sunny, I take RALA on an empty stomach 15-25 minutes before i eat breakfast (and my other supplements). I do get some acid effect after about 5 minutes, but if I drink more water when that happens it usually subsides. I take it that way because I read somewhere that taking it before taking Acetyl L Carnitine helps the absorption of the latter. Best, Hank

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@bustrbrwn22

@helennicola Thanks for putting all your work into researching the his. I should have done that.

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Bustrbrwn, you’re very welcome, anytime😁, that’s what this forum is for! Helen

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@johnbishop

@campana, I tried a tens unit for about 6 weeks when I was first diagnosed with small fiber PN but it didn't really help with the numbness symptoms that I have. I think others have used tens unit with some success. The one I had was a programmable tens unit with 2 separate large pads that you placed your feet on. There is another discussion on Connect that you may want to post your question on where members are discussing tens units.

Has anyone had success using Tens on their feet?: https://connect.mayoclinic.org/discussion/has-anyone-had-success-using-tens-on-their-feet/

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I am using the TENS unit that John is describing. I don't have the sharp pains, only numbness and burning. The tens unit gives electrical stimulus to the feet and lower legs. I didn't think it was helping, until we went on vacation last year and I didn't want to take it along. I quickly realized that what it was doing was keeping my ankles more limber, and also lessening the feeling of the skin tightness. (Sometimes my skin feels like it is going to pop because there isn't enough room for my foot). SO therefore, I use it every morning for 30 - 40 minutes.

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@steeldove

@jimhd Jim, there's a huge difference between a spinal cord stimulator and a peripheral nerve stimulator. I was suggesting a PERIPHERAL NERVE STIMULATOR for those whose neuropathy pain is limited to the feet and ankles.

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@steeldove

You're right. An SCS can work with a number of issues. The reason I have it is to treat the neuropathy pain in my feet and ankles. Other stimulators treat conditions with greater accuracy. A dorsal root ganglion stimulator is one of those. It can be programmed to target specific nerves more precisely than other stimulators.

One lesson I've learned is that it's really important to find a good surgeon who has expertise with implants, and a lot of experience. I wish I'd done a better job with the research and selection of a surgeon.

Jim

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@avmcbellar

@sunnyflower I didn’t notice until one day, after months of taking it, the capsule collapsed in my mouth. I took too long to drink water with it. I noticed the burning feeling was the same as with my stomach. No matter how much water I drank, I could not get that burning feeling to go away. Thankfully, I did not have GERD, the reflux disease, nor was the burning from the neuropathy. I even called the manufacturer with questions to get more information. At first, they tried to brush me off by telling me to call my physician. I was never asked any questions by them. I felt it was their product why should I contact my doctor! What would he know to do that I didn’t? Surprisingly, they began cooperating but gave me a weak suggestion to take it with food. Really? I gave up on them and started experimenting with the supplement on my own. I found a solution that best fits me. I take it with ALC and foods low in acid. Best of luck to you. Toni

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Thx! What is ALC? It can mean a few different things. Thank you!

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