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?

@jesfactsmon

@wilcy was the surgery for the stimulator very difficult or was it easy and straightforward? Will be interested to know more details about how it does after you have had it in a while. Hopefully the pain relief stays with you a long time. Good luck! Hank

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Very simple surgery! Before, would not give me medication! Unreal, my age! Who cares if you get addicted! Anyway, get on you tube! About to take short trip! Couldn’t before

Liked by lorirenee1, rwinney

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@wilcy

Very simple surgery! Before, would not give me medication! Unreal, my age! Who cares if you get addicted! Anyway, get on you tube! About to take short trip! Couldn’t before

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@wilcy I'm so happy for your success. Enjoy your trip!!
Rachel

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@cwallen9

I have tried a device called the Rebuilder. It is supposed to retrain your nerves to operate normally, instead of sending pain signals. I have tried it off and on for over a year, and I cannot say that it helps. I have terrible burning pain in my feet and hands, and it does feel a little better when I am doing it (only 30 minutes, twice a day, max), but it does not help when it is not on. A physical therapist used it and then I bought one (about $1k). You can google it and find out about it.

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Hi cwallen9,
Your post is very timely, regarding the ReBuilder device that you purchased to no avail. I was going to purchase one in the next few weeks , but after seeing your post I am reluctant. I had a 1 hour phone consult with a Chiropractor who inadvertently mentioned ReBuilder in discussion as part of his treatment plan along with some RLT device. He claims to have treated hundreds of successful SFN patients from a Walker to Walking condition using this treatment stressing the devices 7.82 mg low power to stimulate the nerves in my numbed foot. What specifically was your treatment, foot bath or dry application ? 2X daily with a 6 hour interval recommended procedure ? The foot bath unit is 800.00 with a 90 day warranty, what are your thoughts ?

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I'm glad it might be of some help to you. I guess that is what this group is all about. I first used it in physical therapy about once or twice per week. I had spoken with a physical therapist who was retired, but he used to work at the facility and he claimed it helped many of his patients. I believed his testimonial since he would not benefit in any way. I did this for a about two months, and then bought a foot bath unit for myself. I did it once per day for about two weeks straight. I did not notice any significant reduction in pain. I still use it once in a while because it feels good when I am using it. Maybe I didn't try it for a long enough period. I also tried the Inspirastar Frequency Specific Microcurrent machine (FSM). It is similar to the ReBuilder, but it is at a much lower current. It supposedly finds a specific frequency to heal your nerves. I tried this for a month (rented it) without any pain relief. It gets pretty discouraging trying all of these "cures" without any good results. I have neuropathy in my feet, legs, hands and arms from a failed cervical steroid shot. I also have collapsed discs in my neck. Maybe it will help with your problem. Good luck!

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@kazz30

Hi cwallen9,
Your post is very timely, regarding the ReBuilder device that you purchased to no avail. I was going to purchase one in the next few weeks , but after seeing your post I am reluctant. I had a 1 hour phone consult with a Chiropractor who inadvertently mentioned ReBuilder in discussion as part of his treatment plan along with some RLT device. He claims to have treated hundreds of successful SFN patients from a Walker to Walking condition using this treatment stressing the devices 7.82 mg low power to stimulate the nerves in my numbed foot. What specifically was your treatment, foot bath or dry application ? 2X daily with a 6 hour interval recommended procedure ? The foot bath unit is 800.00 with a 90 day warranty, what are your thoughts ?

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@cwallen9 @kazz30 I looked online for critiques of ReBuilder, and found one by neurologist Steven Novella who has great credentials, one being that he's a professor at Yale School of Medicine.

If you Google Steven Novella Rebuilder, you'll find his review.

Jim

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@jimhd

@cwallen9 @kazz30 I looked online for critiques of ReBuilder, and found one by neurologist Steven Novella who has great credentials, one being that he's a professor at Yale School of Medicine.

If you Google Steven Novella Rebuilder, you'll find his review.

Jim

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I read the same review a couple of months back and will post the link to it here as you really should read it before purchasing. He tears some pretty big holes in the claims made for this product. I would not recommend this thing after reading this review. Here it is:
https://sciencebasedmedicine.org/recognizing-dubious-health-devices/

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Thank you for welcoming me to this group. I am looking forward to sharing and learning about this condition.

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@kazz30

Hi cwallen9,
Your post is very timely, regarding the ReBuilder device that you purchased to no avail. I was going to purchase one in the next few weeks , but after seeing your post I am reluctant. I had a 1 hour phone consult with a Chiropractor who inadvertently mentioned ReBuilder in discussion as part of his treatment plan along with some RLT device. He claims to have treated hundreds of successful SFN patients from a Walker to Walking condition using this treatment stressing the devices 7.82 mg low power to stimulate the nerves in my numbed foot. What specifically was your treatment, foot bath or dry application ? 2X daily with a 6 hour interval recommended procedure ? The foot bath unit is 800.00 with a 90 day warranty, what are your thoughts ?

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@kazz30 @cwallen9 Hi there, I was going to buy the Rebuilder as well, and looked on eBay to see if anyone was selling one. A chiropractor was selling his, because he said he did not generally have enough neuropathy patients to keep it. We talked back and forth, and the more we talked, the more I thought he really was selling it because it did not work. I do not remember why, it was so long ago. But I sensed that he was not legit, at all, and did not buy it. It sold on eBay for 500 bucks, brand new. He never got a taker. I too, suffer from severe foot neuropathy. Be safe, Lori Renee

Liked by terrydclaar

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@jesfactsmon

I read the same review a couple of months back and will post the link to it here as you really should read it before purchasing. He tears some pretty big holes in the claims made for this product. I would not recommend this thing after reading this review. Here it is:
https://sciencebasedmedicine.org/recognizing-dubious-health-devices/

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@jesfactsmon @jimhd Hi guys, Just read the review by Steven Novella, and I am glad I trusted my instincts, and never bought it. Great article, and I am actually gonna reread it…..Thanks, Lori

Liked by steeldove, HankB

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@jeanlynne

Thank you for welcoming me to this group. I am looking forward to sharing and learning about this condition.

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Good afternoon @jeanlynne, welcome to Connect and in particular, the Neuropathy group. Have you received a neuropathy diagnosis? Members of this group have many forms of neuropathy. We often find a way to share symptoms and treatments. None of us are medically trained to diagnose or prescribe. We do have a jolly bucket full of experiences and a lot of practice in squeezing the joy out of every day.

Would you be comfortable sharing some of the symptoms that you have experienced? What are you hoping to gain from being part of this public forum? How in the world did you find us?

May you be healthy and content.
Chris

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@artscaping

Good afternoon @jeanlynne, welcome to Connect and in particular, the Neuropathy group. Have you received a neuropathy diagnosis? Members of this group have many forms of neuropathy. We often find a way to share symptoms and treatments. None of us are medically trained to diagnose or prescribe. We do have a jolly bucket full of experiences and a lot of practice in squeezing the joy out of every day.

Would you be comfortable sharing some of the symptoms that you have experienced? What are you hoping to gain from being part of this public forum? How in the world did you find us?

May you be healthy and content.
Chris

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Yes, would participate

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@artscaping

Good afternoon @jeanlynne, welcome to Connect and in particular, the Neuropathy group. Have you received a neuropathy diagnosis? Members of this group have many forms of neuropathy. We often find a way to share symptoms and treatments. None of us are medically trained to diagnose or prescribe. We do have a jolly bucket full of experiences and a lot of practice in squeezing the joy out of every day.

Would you be comfortable sharing some of the symptoms that you have experienced? What are you hoping to gain from being part of this public forum? How in the world did you find us?

May you be healthy and content.
Chris

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Mayo Clinic expands in-person care on all campuses

May 8, 2020

Mayo Clinic will expand in-person care on all of its campuses as COVID-19 executive orders are lifted for elective procedures by governors in Arizona, Florida, Minnesota and Wisconsin.

"Our patients' health and safety is always our top priority," says Amy Williams, M.D., Mayo Clinic Executive Dean for Practice. "We have taken several extra precautions to safely offer in-person care."

Mayo Clinic has implemented enhanced cleaning, masking, testing and screening protocols for staff and patients. In addition, due to social distancing and the executive orders, our communities have experienced a flattening of the curve with a plateau of cases expected through the remainder of the year.

"Based on this, Mayo Clinic can begin seeing patients whose care was deferred and seeing new patients who need access to Mayo Clinic care," says Dr. Williams.

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@southwind

@qball2019 Thank you soooo much for the information!!! Will get on with some reading on all you posted. Was blessed today with my very first visit (virtually) with my new OD, GP…he’s a concierge doctor rather than the group practices I’ve been seeing for generations. Perfect timing with your posting as he will be treating “all” of me. He’s already strategizing about things that have already been tried with me and will work till we get to the end of what could possibly be wrong then fix if at all possible. I have renewed hope!! Will post if/when I learn anything that could contribute to helping other sufferers here.

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Update: Finally, finally have a diagnosis. I have Lyme Disease, and an additional parasite. Will not know until I complete my 6 month series of a protocol treatments if that is what has caused my neuropathy. I am hopeful that that is it, but am now in Phase 2 of 3 for Lyme along with goat medicine (that’s right…g-o-a-t antibiotic) for the parasite. Will again post when I know for sure. Am heading off to the Mayo Lyme board to see what I can find out there about these new developments.

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@southwind

Update: Finally, finally have a diagnosis. I have Lyme Disease, and an additional parasite. Will not know until I complete my 6 month series of a protocol treatments if that is what has caused my neuropathy. I am hopeful that that is it, but am now in Phase 2 of 3 for Lyme along with goat medicine (that’s right…g-o-a-t antibiotic) for the parasite. Will again post when I know for sure. Am heading off to the Mayo Lyme board to see what I can find out there about these new developments.

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Good evening, @southwind Wow! That took some doing. Did you expect Lyme disease? If not, this is really a new development. Please continue to share with Connect. Your words, your story, with lots of sharing, will help so many others who are seeking answers.

Be safe and protected,
Chris

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@southwind

Update: Finally, finally have a diagnosis. I have Lyme Disease, and an additional parasite. Will not know until I complete my 6 month series of a protocol treatments if that is what has caused my neuropathy. I am hopeful that that is it, but am now in Phase 2 of 3 for Lyme along with goat medicine (that’s right…g-o-a-t antibiotic) for the parasite. Will again post when I know for sure. Am heading off to the Mayo Lyme board to see what I can find out there about these new developments.

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@southwind Answers are good! I'm glad you can piece your puzzle together.

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