1. < Neuropathy

In Search of Relief

Posted by dutchman09 @dutchman09, Oct 11, 2018

About 10 months ago I started feeling a pain in the second toe on my left foot. As time progressed my wife noticed my toe was turning dark/black in spots. More time progressed and my feet started feeling hot, numb and cold after a hot shower but the discoloration went away. My Cardiologist suggested seeing a Neurologist in the same building as her office. I waited 2 ½ months for an appointment because they said they would put me on a cancellation list (which they never did.) The day of the appointment I waited 1½ hours past my appointment time. When I questioned the office clerk I was brought into an examining room and waited another 45 minutes for a doctor to see me. He made a few preliminary tests with a tuning fork and a needle and decided to test me on a computer a week later. Two weeks after the test I had to call his office to ask for the results. The diagnosis was a chronic axonal sensorimotor polyneuropathy with a moderate degree of carpal tunnel syndrome. For whatever reason they only tested my right arm, hand and right leg and foot. Nothing on my left side. I was then told my follow up appointment would be 4 months down the road! I filled out a medical release form and requested my records.

I then went to a Chiropractor who claimed to treat Neuropathy with a pulsating inferred laser. After 13 ½ hour visits at $110.00 each I purchased a hand held inferred laser with which my wife is treating me every evening. I am trying to receive a prescription for the Rebuilder Model 2407 Electronic Nerve Stimulator but the Clinic in rural Three Points Az. has just reopened October 1st and cannot find a doctor to place on staff.

I recently saw an excellent special on PBS about the history of the Mayo Clinic and a very good friend of mine who lives in Minnesota has a daughter who is a Cardiac charge nurse at the Mayo Clinic in Rochester, Mn. My lab tests from Aug. 15 show my BG as 101 and my Cholesterol as 129 yet I’ve been prescribed Crestor 5 mg nightly since my heart attack in 2010 which I’ve learned that prolonged use of a statin can lead to Peripheral Neuropathy. I have never taken any prescribed drugs for pre-diabeties or diabetes. I have all test results including the codes for the Rebuilder to be reimbursed by Medicare. Has anyone else heard of or actually used the Rebuilder Model 2407?

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

Mentor
John, Volunteer Mentor | @johnbishop | Oct 14, 2018
In reply to @swiss "Hi @johnbishop - thanks a lot for your comments on lllt and the publication, one I..." + (show)
@swiss

Hi @johnbishop - thanks a lot for your comments on lllt and the publication, one I have not had in my collection as yet - I would like to add another one or two studies on low-level laser therapy, also caled photobiomodulation. On most recent studies, partially not as yet published, I understand that the applied dose per cm2 tissue which was usually from 1 to 5 joules seems to be consierably higher. So those laser lighter type output power of 1 to 5 mW would take quite some time if such recommended doses should be reached.
Also I share your intention on getting one of those low cost one-man-sauna, I found a lot of relatively low cost units on amazon.de, the german version, there again it may be interesting to see what infra red heat lamps they are using, as the absorption of water in the human cells depends on the wavelength used in the infra red spectrum. I am trying to add the link on water absorption of light. Mostly the manufacturers do not state the wave length of their heat lamps but should be able to disclose if one inquires. I think that the wavelength should be below 2000nm so there is some transmisison of light in subcutaneous tissue structures which could, like laser light, stimulate the repair of peripheral nerve damages.

Jump to this post

Hi @swiss, thanks for the update and for the information and links. I think it's one of the pieces for helping the numbness I experience. I also think there is a cellular nutrition side that needs to be addressed which is one of the things I'm focused on doing now with supplements and vitamins.

REPLY
1 reply
swiss | @swiss | Oct 14, 2018
In reply to @johnbishop "Hi @swiss, thanks for the update and for the information and links. I think it's one..." + (show)
@johnbishop

Hi @swiss, thanks for the update and for the information and links. I think it's one of the pieces for helping the numbness I experience. I also think there is a cellular nutrition side that needs to be addressed which is one of the things I'm focused on doing now with supplements and vitamins.

Jump to this post

Hi @johnbishop - I have been on the suggested nutrition for over one year by now, unfortunately the progression of my idiopathic, demyelinating PN of small fibres has not stopped nor reversed - I am continuing anyhow. But after realyl getting into the literature of Stem Cell Therapy, I will now travel to a Budapest (Hungary) Center for plastic surgery where they offer the S C Therapy with my own fat cells (via liposuction and centrifugal extraction of body own stem cells which are then reinjected into knees for my knee arthrosis and intravenous to address PN) - it is expensive and there is no guarantee. But with almost 80 years of age I have spent a furtune on all kind of ways and means to address my PN that it makes no big difference to try something new which is only just starting in Europe and where most countries do not allow SCT. We will see! Has anyone here done any SCT and what was the outcome?

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Oct 14, 2018

Hi @swiss, I don’t believe anyone has reported or verified a successful stem cell treatment for Neuropathy yet but I would love to hear how yours goes if you have it done.

From what little I’ve read they haven’t broken the code yet for making stem cells the help the regeneration of the myelin sheath for nerve cells. There are a lot of clinics popping up around the U.S. professing to be able to treat PN but they are no FDA clinical trials yet which normally is where the treatments start.

REPLY
holhealthcare | @holhealthcare | Oct 14, 2018
In reply to @swiss "Hi @johnbishop - thanks a lot for your comments on lllt and the publication, one I..." + (show)
@swiss

Hi @johnbishop - thanks a lot for your comments on lllt and the publication, one I have not had in my collection as yet - I would like to add another one or two studies on low-level laser therapy, also caled photobiomodulation. On most recent studies, partially not as yet published, I understand that the applied dose per cm2 tissue which was usually from 1 to 5 joules seems to be consierably higher. So those laser lighter type output power of 1 to 5 mW would take quite some time if such recommended doses should be reached.
Also I share your intention on getting one of those low cost one-man-sauna, I found a lot of relatively low cost units on amazon.de, the german version, there again it may be interesting to see what infra red heat lamps they are using, as the absorption of water in the human cells depends on the wavelength used in the infra red spectrum. I am trying to add the link on water absorption of light. Mostly the manufacturers do not state the wave length of their heat lamps but should be able to disclose if one inquires. I think that the wavelength should be below 2000nm so there is some transmisison of light in subcutaneous tissue structures which could, like laser light, stimulate the repair of peripheral nerve damages.

Jump to this post

My foot feels nearly normal. I think I remember what normal was after 7 years.
http://www.podiatrytoday.com/can-low-level-laser-therapy-treat-diabetic-peripheral-neuropathy

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 14, 2018
In reply to @holhealthcare "My foot feels nearly normal. I think I remember what normal was after 7 years. www.podiatrytoday.com/can-low-level-laser-therapy-treat-diabetic-peripheral-neuropathy" + (show)
@holhealthcare

My foot feels nearly normal. I think I remember what normal was after 7 years.
http://www.podiatrytoday.com/can-low-level-laser-therapy-treat-diabetic-peripheral-neuropathy

Jump to this post

Hi @holhealthcare, thanks for posting the link for the LLLT treatment for PN. It does show promise and if it works for eliminating the pain part that would be a real plus. It's great that it works for you and your foot feels nearly normal. My feet were feeling almost normal after a couple of years on supplements but then I had to start using compressing socks for lymphedema. Now me feet feel really good when I take the compression socks off and not so good when I'm wearing them all day long. Still LLLT holds enough promise for me that I might investigate purchasing a small one I can use at home. I'm just extra cautious due to all the scam treatments out there for people with PN. I would prefer to see results from clinical trials and not rely on small subset studies when the cost is out of budget range. I am grateful for all members who share their personal experience. It helps me in my decision making ☺

John

REPLY
peggyn | @peggyn | Apr 8, 2019

I saw this on a site on the internet. They are saying it works great for pn. I seem to get fooled by a lot of meds and products to make my life better.. Has anyone seen or tried this??

REPLY
4 replies
Mentor
John, Volunteer Mentor | @johnbishop | Apr 8, 2019
In reply to @peggyn "I saw this on a site on the internet. They are saying it works great for..." + (show)
@peggyn

I saw this on a site on the internet. They are saying it works great for pn. I seem to get fooled by a lot of meds and products to make my life better.. Has anyone seen or tried this??

Jump to this post

@peggyn I found this FDA warning letter to them.
https://www.casewatch.net/fdawarning/prod/2008/rebuilder.shtml

REPLY
lois6524 | @lois6524 | Apr 8, 2019
In reply to @peggyn "I saw this on a site on the internet. They are saying it works great for..." + (show)
@peggyn

I saw this on a site on the internet. They are saying it works great for pn. I seem to get fooled by a lot of meds and products to make my life better.. Has anyone seen or tried this??

Jump to this post

Peggy -- yes I know of a few people have used this and had some relief in their symptoms, and others who have tried it and didn't work for them. This is the frustrating part of neuropathy: our bodies are all different, and the way in which we came down with neuropathy is different (there are over 100 different ways) -- so therefore what works for one person, will not work for others -- we want so badly to find an answer to lessen our pain, that sometimes we are willing to spend many dollars to no avail -- I liked the comment that we need to find peace within us regarding our neuropathy,

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 10, 2019
In reply to @peggyn "I saw this on a site on the internet. They are saying it works great for..." + (show)
@peggyn

I saw this on a site on the internet. They are saying it works great for pn. I seem to get fooled by a lot of meds and products to make my life better.. Has anyone seen or tried this??

Jump to this post

@peggyn there is another older discussion started by @dutchman09 that you may want to read through which talks about the Rebuilder device.

> Groups > Neuropathy > In Search of Relief
-- https://connect.mayoclinic.org/discussion/in-search-of-relief/

REPLY
lorirenee1 | @lorirenee1 | Apr 10, 2019
In reply to @peggyn "I saw this on a site on the internet. They are saying it works great for..." + (show)
@peggyn

I saw this on a site on the internet. They are saying it works great for pn. I seem to get fooled by a lot of meds and products to make my life better.. Has anyone seen or tried this??

Jump to this post

My son's friend's friend bought it and said it helps tremendously, but I still did not buy it. I have bought so many things that do nothing, that I was still skeptical. It is expensive!

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