1. < Neuropathy
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.

jeanlynne | @jeanlynne | May 18, 2020

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

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1 reply
lorirenee1 | @lorirenee1 | May 18, 2020
In reply to @kazz30 "Hi cwallen9, Your post is very timely, regarding the ReBuilder device that you purchased to no..." + (show)
@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

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lorirenee1 | @lorirenee1 | May 18, 2020
In reply to @jesfactsmon "I read the same review a couple of months back and will post the link to..." + (show)
@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

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | May 19, 2020
In reply to @jeanlynne "Thank you for welcoming me to this group. I am looking forward to sharing and learning..." + (show)
@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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2 replies
wilcy | @wilcy | May 19, 2020
In reply to @artscaping "Good afternoon @jeanlynne, welcome to Connect and in particular, the Neuropathy group. Have you received a..." + (show)
@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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steeldove | @steeldove | May 20, 2020
In reply to @artscaping "Good afternoon @jeanlynne, welcome to Connect and in particular, the Neuropathy group. Have you received a..." + (show)
@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 | @southwind | May 29, 2020
In reply to @southwind "@qball2019 Thank you soooo much for the information!!! Will get on with some reading on all..." + (show)
@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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2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | May 29, 2020
In reply to @southwind "Update: Finally, finally have a diagnosis. I have Lyme Disease, and an additional parasite. Will not..." + (show)
@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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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | May 29, 2020
In reply to @southwind "Update: Finally, finally have a diagnosis. I have Lyme Disease, and an additional parasite. Will not..." + (show)
@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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lmcfm1 | @lmcfm1 | May 30, 2020

Good morning and thank you for this forum. I was diagnosed with SFN a little over a year ago following several back sprains. I also have Celiac and thyroid issues. Turns out I have one of the neuropathy anti bodies TS-HDS. Does anyone know about this? Also, what are the best daily supplements to take. Thank you for any information. Would love to hear from a few fellow SFN in the same boat. Also, my feet are very sensitive and I use fleece liners in shoes plus wear thick heat holder socks for cushion. If anyone knows of soft shoes with padding similar to fleece, please let me know. Thank you and be well.

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