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.

peggyn | @peggyn | Apr 10, 2019
In reply to @lorirenee1 "My son's friend's friend bought it and said it helps tremendously, but I still did not..." + (show)
@lorirenee1

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!

Jump to this post

Thank you. Very interesting... I would love to know of something that improves it, not only helps with pain. I really think mine is from compressed nerves, if there was a surgery that they would do to make it better I would I would do it for sure. That old saying that you would spend every penny you have for your health is pretty much true. I too take a lot of supplements, probably too many because I don,t see any improvement.

My friends son is getting b 12 injections and says it helps

REPLY
1 reply
bruce2666 | @bruce2666 | Apr 11, 2019

You stated you bought a hand held inferred laser. #1 did you realize any benefit and if so what #2 what laser did you buy and are you satisfied with it. Thanks - Bruce

REPLY
bruce2666 | @bruce2666 | Apr 11, 2019
In reply to @johnbishop "Hi @dutchman09, I'm glad the information was helpful and even more happy that you are being..." + (show)
@johnbishop

Hi @dutchman09, I'm glad the information was helpful and even more happy that you are being a strong advocate for your own health. The way the healthcare industry is going a person really needs to advocate and work with the doctors to come up with a treatment plan. Here is a patient story I ran across earlier that might be helpful.

Breaking Away From Pain With the Help of ‘The Scrambler’
-- https://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/

Also the site with a little more information on the device:
-- https://www.st-team.eu/

Keep learning as much as you can about your condition, it can't hurt and it most likely will help you work better with the doctors on a treatment that works for you.

John

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Hi John. We have a Calmare treatment center here in Greenville SC. I have non diabetic idiopathic small fiber neuropathy. Diagnosed in 2003 and in last year the pain has gone to 10. I have even been to Duke for 2nd opinion and saw a neuro at Emory who talked about a stimulator which frightened me. Do you know anyone with my diagnosis that had success with Calmare treatment. It is FDA approved but my Medicare and supplement will not pay yet. Also Mayo and Johns Hopkins give it good reviews for relief of neuropathic pain. It is 10 consecutive treatments lasting 1 hour and cost is $225 per treatment. Also I have to be off lyrica for a week prior to treatment. Thanks. Bruce

REPLY
bruce2666 | @bruce2666 | Apr 11, 2019
In reply to @johnbishop "Hi @dutchman09, I'm glad the information was helpful and even more happy that you are being..." + (show)
@johnbishop

Hi @dutchman09, I'm glad the information was helpful and even more happy that you are being a strong advocate for your own health. The way the healthcare industry is going a person really needs to advocate and work with the doctors to come up with a treatment plan. Here is a patient story I ran across earlier that might be helpful.

Breaking Away From Pain With the Help of ‘The Scrambler’
-- https://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/

Also the site with a little more information on the device:
-- https://www.st-team.eu/

Keep learning as much as you can about your condition, it can't hurt and it most likely will help you work better with the doctors on a treatment that works for you.

John

Jump to this post

John, thanks for the information on Calmare. Will pursue. Bruce

REPLY
lois6524 | @lois6524 | Apr 11, 2019

it looks like this is scrambler therapy --- Calmare is the name of a clinic???

REPLY
cmartinjr | @cmartinjr | Apr 12, 2019
In reply to @peggyn "Thank you. Very interesting... I would love to know of something that improves it, not only..." + (show)
@peggyn

Thank you. Very interesting... I would love to know of something that improves it, not only helps with pain. I really think mine is from compressed nerves, if there was a surgery that they would do to make it better I would I would do it for sure. That old saying that you would spend every penny you have for your health is pretty much true. I too take a lot of supplements, probably too many because I don,t see any improvement.

My friends son is getting b 12 injections and says it helps

Jump to this post

I have been consistently using a rebuilder, as a recommendation of a neuropath Dr, , for 11 months and received no improvement. It may help some people that are in the early or minor stages of neuropathy, but 0 improvement for me.

REPLY
1 reply
lorirenee1 | @lorirenee1 | Apr 12, 2019
In reply to @cmartinjr "I have been consistently using a rebuilder, as a recommendation of a neuropath Dr, , for..." + (show)
@cmartinjr

I have been consistently using a rebuilder, as a recommendation of a neuropath Dr, , for 11 months and received no improvement. It may help some people that are in the early or minor stages of neuropathy, but 0 improvement for me.

Jump to this post

I am so sorry to hear that it has not worked. I just could not bring myself to buy it. I have bought various cold laser treatments that did nothing. I bought a few other expensive things and decided that was it. Too sad...Hot water whirl pool helps me....Lori Renee

REPLY
dabshire | @dabshire | Apr 15, 2019

I had knee surgery to repair meniscus and cartlidge was told I had neuropathy. Found out after alot of complaining for 5 wks. I have a bloodclot in calf of leg. This has been a horrible pain and dealing with a dr that assured me not to worry about bloodclots . Well after I had enough and said again something us not right. They decided to do a DVT DOPPLER and found it. Please keep fighting when you know something is not right. We know our bodies. Now on a blood thinner praying it works. Good luck to all.

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