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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 15, 2020
In reply to @sunnyflower "Thx! What is ALC? It can mean a few different things. Thank you!" + (show)
@sunnyflower

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

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@sunnyflower ALC is Acetyl-L-Carnitine. It also is said to help with neuropathy symptoms when taken along with ALA. Toni 😀

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1 reply
steeldove | @steeldove | Sep 15, 2020
In reply to @jimhd "@steeldove You're right. An SCS can work with a number of issues. The reason I have..." + (show)
@jimhd

@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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@jimhd My Pain Medicine doc at Mayo said that a peripheral nerve stimulator is better for targeting pain in feet and ankles. I'm heading back up to Rochester MN next month to trail a SCS for my back issues and a peripheral nerve stimulator for meralgia paresthetica and foot/ankle pain. Should be a fun trip!!!

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1 reply
avmcbellar | @avmcbellar | Sep 15, 2020
In reply to @johnbishop "Another thing that helps when taking R-ALA if you have burning or stomach issues is to..." + (show)
@johnbishop

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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Hi John @johnbishop I eat a whole cucumber because of its alkalinity. To save on carbs I wonder if it will help with the ALA Instead of the banana. Just a thought. Toni

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bustrbrwn22 | @bustrbrwn22 | Sep 15, 2020
In reply to @sunnyflower "Hi @bustrbrwn22, I always ask for lidocaine at the IV site and then the IV doesn't..." + (show)
@sunnyflower

Hi @bustrbrwn22, I always ask for lidocaine at the IV site and then the IV doesn't hurt at all. The Lidocaine is given w/ such a tiny needle that it's barely a sting. A lot won't want to give it and say it makes the veins roll away or some other reason but I tell them it always works for me at the first attempt of the IV and it does! Then I would request what they call, "light" or "conscious" sedation. I was barely conscious but think mostly out, b/c the injections (2) I had, were painless. Pretty drugged the rest of the day and must have a driver. I got a significant increase w/ my heart rate which is one of the side-effects one can have from the injected steroid. The reasons I had mine was quite different than the typical low back, butt and leg/foot pain so it was not to have relief from pain. It's a complicated diagnostic for numbness and my leg giving out for no reason, without pain. I do have aching thigh pain but it's not the horrific pain I had before my first three back surgeries. So as far as results, none known yet. Please keep me posted and I will be praying for you. I had to pay a total of $100 for my procedure and I am on Kaiser Permanente Medicare Optimal Advantage plan. Keep me posted but know I'm probably not going to be as active here on the Neuropathy blog b/c I HAD to join the bone/joint/muscle blog to help w/ some decisions I have to make about taking a drug w/ potential serious side-effects for my "severe" osteoporosis . All the best, you're a trooper to say the least! What BTW, are you having the injection for? Many blessings, Sunnyflower

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@sunnyflower $100???? With my husband’s insurance it’s over $2500 and that includes conscious sedation. I can’t wait to see how it goes next week!

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2 replies
sunnyflower | @sunnyflower | Sep 15, 2020
In reply to @bustrbrwn22 "@sunnyflower $100???? With my husband’s insurance it’s over $2500 and that includes conscious sedation. I can’t..." + (show)
@bustrbrwn22

@sunnyflower $100???? With my husband’s insurance it’s over $2500 and that includes conscious sedation. I can’t wait to see how it goes next week!

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GASP!!! 😲 I am so sorry to hear about your cost! Oh my GRACIOUS!! That's criminal!! 😡 You are on my heart and mind and in my prayers. Hugs, Sunnyflower 😊💗

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Hank | @jesfactsmon | Sep 16, 2020
In reply to @steeldove "@jimhd My Pain Medicine doc at Mayo said that a peripheral nerve stimulator is better for..." + (show)
@steeldove

@jimhd My Pain Medicine doc at Mayo said that a peripheral nerve stimulator is better for targeting pain in feet and ankles. I'm heading back up to Rochester MN next month to trail a SCS for my back issues and a peripheral nerve stimulator for meralgia paresthetica and foot/ankle pain. Should be a fun trip!!!

Jump to this post

@steeldove
Marilyn, did you follow some of the posts that @fredjan2016 had written describing his experiences with having a peripheral nerve stimulator installed earlier this summer? Fred, if you see this, could you update us on how that is going? You had it put in in July sometime, right? Back then you said it was helping you to walk better but not that significant of pain relief. Is there any improvement in the pain relief? Hank

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1 reply
avmcbellar | @avmcbellar | Sep 16, 2020
In reply to @bustrbrwn22 "@sunnyflower $100???? With my husband’s insurance it’s over $2500 and that includes conscious sedation. I can’t..." + (show)
@bustrbrwn22

@sunnyflower $100???? With my husband’s insurance it’s over $2500 and that includes conscious sedation. I can’t wait to see how it goes next week!

Jump to this post

Hi @bustrbrwn22 I believe the final cost depends on where the procedure is done. If the doctors goes out to a facility vs his office that facility has to get paid. Toni

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steeldove | @steeldove | Sep 16, 2020
In reply to @jesfactsmon "@steeldove Marilyn, did you follow some of the posts that @fredjan2016 had written describing his experiences..." + (show)
@jesfactsmon

@steeldove
Marilyn, did you follow some of the posts that @fredjan2016 had written describing his experiences with having a peripheral nerve stimulator installed earlier this summer? Fred, if you see this, could you update us on how that is going? You had it put in in July sometime, right? Back then you said it was helping you to walk better but not that significant of pain relief. Is there any improvement in the pain relief? Hank

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@jesfactsmon @fredjan2016 I have read and also been told by pain medicine doc at Mayo that a 50% improvement in pain level is considered a success. I'll pray for more than that 😉

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sunnyflower | @sunnyflower | Sep 17, 2020
In reply to @avmcbellar "@sunnyflower ALC is Acetyl-L-Carnitine. It also is said to help with neuropathy symptoms when taken along..." + (show)
@avmcbellar

@sunnyflower ALC is Acetyl-L-Carnitine. It also is said to help with neuropathy symptoms when taken along with ALA. Toni 😀

Jump to this post

Thx so much Toni! I read some about it but will be putting it off for a bit while I'm in the midst of having to make a huge medication decision. I sure do appreciate you!! 🤗

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Mentor
Jim, Volunteer Mentor | @jimhd | Sep 25, 2020
In reply to @sunnyflower "Hi @bustrbrwn22, I always ask for lidocaine at the IV site and then the IV doesn't..." + (show)
@sunnyflower

Hi @bustrbrwn22, I always ask for lidocaine at the IV site and then the IV doesn't hurt at all. The Lidocaine is given w/ such a tiny needle that it's barely a sting. A lot won't want to give it and say it makes the veins roll away or some other reason but I tell them it always works for me at the first attempt of the IV and it does! Then I would request what they call, "light" or "conscious" sedation. I was barely conscious but think mostly out, b/c the injections (2) I had, were painless. Pretty drugged the rest of the day and must have a driver. I got a significant increase w/ my heart rate which is one of the side-effects one can have from the injected steroid. The reasons I had mine was quite different than the typical low back, butt and leg/foot pain so it was not to have relief from pain. It's a complicated diagnostic for numbness and my leg giving out for no reason, without pain. I do have aching thigh pain but it's not the horrific pain I had before my first three back surgeries. So as far as results, none known yet. Please keep me posted and I will be praying for you. I had to pay a total of $100 for my procedure and I am on Kaiser Permanente Medicare Optimal Advantage plan. Keep me posted but know I'm probably not going to be as active here on the Neuropathy blog b/c I HAD to join the bone/joint/muscle blog to help w/ some decisions I have to make about taking a drug w/ potential serious side-effects for my "severe" osteoporosis . All the best, you're a trooper to say the least! What BTW, are you having the injection for? Many blessings, Sunnyflower

Jump to this post

@sunnyflower It sounds from what you wrote in this message that you had sedation for steroid injections. Is that correct? I'm wondering if I could get it for a very, very painful guided injection in my thumb for arthritis.

Thanks, sunny. You're a blessing and a great encourager (maybe one of your spiritual gifts?).

Jim

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