1. < Neuropathy

Has anyone benefited from treatment claimed by Neuropathy Clinics?

Posted by avmcbellar @avmcbellar, Sep 15, 2020

Has anyone benefited from the neuropathy treatments claimed by clinics! I see advertisements on television saying there is help for people who sustained 15% or less nerve damage. Most insurance plans cover the cost including Medicare. I called the clinic to learn more information. The clinic does an initial exam to determine the percentage of nerve damage. They offer help to resolve the neuropathy through a series of visits incorporating exercises. They will determine how many visits to the office will be needed for therapy from the start. I was just curious if anyone has tried this.

Interested in more discussions like this? Go to the Neuropathy Support Group.

kenc | @kenc | Apr 17, 2022
In reply to @dlmdinia "Sorry it's so late, but I just now found your post. I participated in a clinical..." + (show)
@dlmdinia

Sorry it's so late, but I just now found your post. I participated in a clinical trial for neuropathy at UIHC in Iowa City IA last summer. The PhD in neurology tested me every 2 weeks, and the "tuning fork" is indeed a legitimate tool using the vibrations to test nerve sensitivity. I don't know what you mean by "pinwheel" but sharp and blunt pins were also employed. So, not quackery.

Jump to this post

The doctor used the similar items to test my nerve sensitivity.

REPLY
dlmdinia | @dlmdinia | Apr 17, 2022
In reply to @johnbishop "Welcome @dlmdinia, I agree that the tuning fork can be a legitimate tool to test nerve..." + (show)
@johnbishop

Welcome @dlmdinia, I agree that the tuning fork can be a legitimate tool to test nerve sensitivity. I was being a little flippant with my response and didn't mean to offend anyone. I was specifically talking about the dubious help and high cost of so called neuropathy clinics. I do think that a tuning fork is not a definitive test for neuropathy although it may provide information on nerve sensitivity. Again, it's just my non medical and personal opinion from my own research.

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed -- https://www.youtube.com/watch?v=3FrQ7Glvgok

Neuropathy Commons aslo has some information on the criteria for diagnosing which I think the skin punch biopsy is the gold standard -- https://neuropathycommons.org/diagnosis/diagnosing-peripheral-neuropathy

I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. Have you been diagnosed with neuropathy? Do you mind sharing a little more about the outcome of the clinical trial, did it help you find a treatment?

Jump to this post

I underwent 20 weeks of chemo for breast cancer ending 7/13/2020. My hands became overly sensitive almost immediately after the 1st couple of treatments. My feet started to bother me and I had balance and joint issues about 3 months in.. Prior to June 19, 2021, 2 different oncologists failed to diagnose my neuropathy. I self-diagnosed using information off the Cancer Treatment Centers of America's website, and both oncologists happily agreed. Answering an ad in the local paper, I went through the process of applying for and then joining the clinical trial for neuropathy at UIHC in Iowa City with my first visit being June 19th. Every 2 weeks the visits consisted of labwork, pin, vibration and reflex tests with the neuro, and pill counting with replenishment when necessary. The 1st and every other visit I also had a skin biopsy near ankle and a visit with an oncologist along with some kind of skin cell scan on my non-dominant little finger performed by the neuro. Sept. 13th was my last regular visit with a final followup on Dec. 6th. The supplement being tested was nicotinamide aka niagen. I was patient #7, so I'm sure the trial is on-going. I did not notice any improvement in my neuropathy symptoms, but was unofficially told that some patients have been getting good results. Perhaps I received the placebo or it just wasn't working on me. It was totally worth the time and effort as not only had I had MY diagnosis of neuropathy confirmed by a stellar medical institution, but the wonderful oncologist there was able to refer me to a new oncologist she had trained herself who practiced 15 min. away from me rather than the hour to Iowa City and he seems much more respectful and invested in my care. Here is a link to the trial.
https://clinicaltrials.gov/ct2/show/NCT04112641?cond=Neuropathy&cntry=US&state=US%3AIA&draw=2&rank=1

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 17, 2022
In reply to @dlmdinia "I underwent 20 weeks of chemo for breast cancer ending 7/13/2020. My hands became overly sensitive..." + (show)
@dlmdinia

I underwent 20 weeks of chemo for breast cancer ending 7/13/2020. My hands became overly sensitive almost immediately after the 1st couple of treatments. My feet started to bother me and I had balance and joint issues about 3 months in.. Prior to June 19, 2021, 2 different oncologists failed to diagnose my neuropathy. I self-diagnosed using information off the Cancer Treatment Centers of America's website, and both oncologists happily agreed. Answering an ad in the local paper, I went through the process of applying for and then joining the clinical trial for neuropathy at UIHC in Iowa City with my first visit being June 19th. Every 2 weeks the visits consisted of labwork, pin, vibration and reflex tests with the neuro, and pill counting with replenishment when necessary. The 1st and every other visit I also had a skin biopsy near ankle and a visit with an oncologist along with some kind of skin cell scan on my non-dominant little finger performed by the neuro. Sept. 13th was my last regular visit with a final followup on Dec. 6th. The supplement being tested was nicotinamide aka niagen. I was patient #7, so I'm sure the trial is on-going. I did not notice any improvement in my neuropathy symptoms, but was unofficially told that some patients have been getting good results. Perhaps I received the placebo or it just wasn't working on me. It was totally worth the time and effort as not only had I had MY diagnosis of neuropathy confirmed by a stellar medical institution, but the wonderful oncologist there was able to refer me to a new oncologist she had trained herself who practiced 15 min. away from me rather than the hour to Iowa City and he seems much more respectful and invested in my care. Here is a link to the trial.
https://clinicaltrials.gov/ct2/show/NCT04112641?cond=Neuropathy&cntry=US&state=US%3AIA&draw=2&rank=1

Jump to this post

Thank you for the follow up. Have you looked into any alternative or complementary therapies to see if they might help? I've read a few associated with chemo induced neuropathy but have no experience with them. I do take supplements that help some with the numbness from my neuropathy.

Here's an article from 2015 -- Natural Products and Complementary Therapies for Chemotherapy-Induced Peripheral Neuropathy: A Systematic Review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4727999/

REPLY
bruwmac | @bruwmac | Jul 4, 2023

I have recently begun a treatment program. Upfront cost took a chunk out of my savings, but I have been suffering with neuropathy since 2011. I went in skeptical and after a month I remain so. I received two types of infrared equipment, electrical stimulation equipment and a quake plate that vibrates fairly enthusiastically.
I believe they provide a nutritional regimen to most clients, but, because of my heart issues, they didn't put me on that.
I have been diligently doing the home treatments and driving an hour and a half to the clinic every week. I am taking a few days off, right now, because the treatments aggravated the pain in my feet.
At the clinic, I receive a laser wand treatment on my feet and hands and stand on a jumbo quake plate machine for 10 minutes.
It burns my biscuits to think I am causing myself more pain, at great financial cost, because the clinic has a huge population of folks whose misery they can capitalize on.
Initially I was following written instructions for using the home laser, but I was doing to much at one time, due to an ambiguity in the instructions. When I tried to convey my thoughts on their instructions, I was shut down and labeled argumentive.
Since then, the program they finally loaded on to the app they use, provides a check list of things to do daily. They are all incorrect for my treatment plan.
Everyday a healthy recipe and a reminder to take the supplements daily. But... I'm not on the nutritional plan.
The other things are for equipment I don't have, all much more expensive than what they actually gave me.
All I can do is carry on with the treatments and pray that the benefits they claim will occur do occur.

REPLY
2 replies
michhino | @michhino | Jul 5, 2023

What type of neuropathy? I am a diabetic since 2017 and diabetic neuropathy started with my feet (tingling, numb, painful nerve strikes, etc..) in 2018 which nerve damages eventually spread into my calves and thighs plus waist. Until this day(2023), I have been dealing with diabetes and painful neuropathy.

After all the doctors, neurologist, emergency rooms, hospitals, etc.. , plus prescribed medications (gabapentin, Juniva, Metformin, Duloxetine, etc.. I completely regret to spend thousands and thousands of dollars (Out of Pocket and/or Insurance)...

After 5 years with such conditions, you DO NOT want the neuropathy (nerve damage) to quickly grow and affect your entire feet, calves, thighs, and hands as it is an extremely terrible feeling along with very poor state of mind, anxiety, stress, daily activities, etc..

Sadly, REAL answer for these serious mental and health complications and conditions were experienced as "NO CURE" !

I adopted a 5 year dog to help encourage walking at least 4 times a week.

My advise is to eat healthy, exercise, and most definitely "Save your Money"...

Good Luck!

REPLY
kingfish1952 | @kingfish1952 | Jul 6, 2023
In reply to @bruwmac "I have recently begun a treatment program. Upfront cost took a chunk out of my savings,..." + (show)
@bruwmac

I have recently begun a treatment program. Upfront cost took a chunk out of my savings, but I have been suffering with neuropathy since 2011. I went in skeptical and after a month I remain so. I received two types of infrared equipment, electrical stimulation equipment and a quake plate that vibrates fairly enthusiastically.
I believe they provide a nutritional regimen to most clients, but, because of my heart issues, they didn't put me on that.
I have been diligently doing the home treatments and driving an hour and a half to the clinic every week. I am taking a few days off, right now, because the treatments aggravated the pain in my feet.
At the clinic, I receive a laser wand treatment on my feet and hands and stand on a jumbo quake plate machine for 10 minutes.
It burns my biscuits to think I am causing myself more pain, at great financial cost, because the clinic has a huge population of folks whose misery they can capitalize on.
Initially I was following written instructions for using the home laser, but I was doing to much at one time, due to an ambiguity in the instructions. When I tried to convey my thoughts on their instructions, I was shut down and labeled argumentive.
Since then, the program they finally loaded on to the app they use, provides a check list of things to do daily. They are all incorrect for my treatment plan.
Everyday a healthy recipe and a reminder to take the supplements daily. But... I'm not on the nutritional plan.
The other things are for equipment I don't have, all much more expensive than what they actually gave me.
All I can do is carry on with the treatments and pray that the benefits they claim will occur do occur.

Jump to this post

Sorry to her that you're going through this. My experience has been that these treatments are a sham. I would stop wasting your money and consult an experienced neurologist who specifies in neuropathy. You don't mention if you are on any meds. I've had some success with Pregabalin (Lyrica) + Oxcarbazepine which helps take the edge off. Where are you located?

REPLY
1 reply
michhino | @michhino | Jul 7, 2023

Texas. Mid 50s. I have been to neuropathy specialist but as I mentioned, NO CURE! I was asked to only to continue take the medications such as gabapentin, juniva, insulin, etc. but there is no solution unless you decide to amputate your feet, legs and hands. I just could not dream nor manage of this type of lifestyle as I will continue to suffer in attempt to ignore the pain and discomfort for the rest of my life... : (

REPLY
bruwmac | @bruwmac | Jul 7, 2023
In reply to @kingfish1952 "Sorry to her that you're going through this. My experience has been that these treatments are..." + (show)
@kingfish1952

Sorry to her that you're going through this. My experience has been that these treatments are a sham. I would stop wasting your money and consult an experienced neurologist who specifies in neuropathy. You don't mention if you are on any meds. I've had some success with Pregabalin (Lyrica) + Oxcarbazepine which helps take the edge off. Where are you located?

Jump to this post

I will go through the treatment program.
As far as meds I was taking 3600 mg gabapentin daily for years. Tramadol was added along the way. A new doc just prescribed Lyrica in hopes that will replace Tramadol which has long term use consequences.

REPLY
kingfish1952 | @kingfish1952 | Jul 7, 2023

I've found Lyrica to be very tolerable with no side effects together with the Trileptal. Typical maximum dosage for Lyrica is 600mg/day.

REPLY
bb0753 | @bb0753 | Jul 7, 2023
In reply to @bruwmac "I have recently begun a treatment program. Upfront cost took a chunk out of my savings,..." + (show)
@bruwmac

I have recently begun a treatment program. Upfront cost took a chunk out of my savings, but I have been suffering with neuropathy since 2011. I went in skeptical and after a month I remain so. I received two types of infrared equipment, electrical stimulation equipment and a quake plate that vibrates fairly enthusiastically.
I believe they provide a nutritional regimen to most clients, but, because of my heart issues, they didn't put me on that.
I have been diligently doing the home treatments and driving an hour and a half to the clinic every week. I am taking a few days off, right now, because the treatments aggravated the pain in my feet.
At the clinic, I receive a laser wand treatment on my feet and hands and stand on a jumbo quake plate machine for 10 minutes.
It burns my biscuits to think I am causing myself more pain, at great financial cost, because the clinic has a huge population of folks whose misery they can capitalize on.
Initially I was following written instructions for using the home laser, but I was doing to much at one time, due to an ambiguity in the instructions. When I tried to convey my thoughts on their instructions, I was shut down and labeled argumentive.
Since then, the program they finally loaded on to the app they use, provides a check list of things to do daily. They are all incorrect for my treatment plan.
Everyday a healthy recipe and a reminder to take the supplements daily. But... I'm not on the nutritional plan.
The other things are for equipment I don't have, all much more expensive than what they actually gave me.
All I can do is carry on with the treatments and pray that the benefits they claim will occur do occur.

Jump to this post

I tried a similar treatment program. The people were very nice. It included hyperbaric oxygen chamber 2x week, infared light boot to use at home, electrostimulation in office 1 x week, ultrasound tx 1 time a week. Supplements and nutriental recommendations geared towards diabetes which i do not have. Cost was to be $3,000 for whole thing paid in 2 payments, after 1st payment and 6 weeks of treatment there was no change. They seemed very disappointed I saw no improvement and they allowed me to drop out and not make second payment.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.