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?

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.

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@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.

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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

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@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

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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

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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

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@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

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

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

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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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