Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

@painwarrior

I've been on a Fentanyl patch for years for my peripheral neuropathy. It's the only thing that works to keep the burning pins and needles feeling at bay. My strength on the patch is 100 mcg/hr. I replace it at the same time every three days. I really can't survive without it.

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September 22nd 23 I started using the rebuilder 300 water Bath and red light hand held therapy.
Took away 96% of my pain in my feet and legs. After 4 months I started over stimulating. Where I gotta real severe burning feeling during the day. About 4 hours later, cut back 1 week on the water Bath started back up 5 minutes in the morning. 4th day. It seems to be working.
That's where I'm at.

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I use rebuilder three hundred for my peripheral Neurapathy
bath water 30 minutes in the morning, 30 minutes at night.
490 days don't go over for. On your level from 0 too 8 So you don't overstimate, do not want to do that. That's where I am at. Add to stop doing it for a week.
Start backup 5 minutes in the morning.
Don't go over. The number 4.
Rebuild yourselves through 300 at $1000.
I've seen it cheaper.
Do not go to a chiropractor they'll rip you off.
Medicaid, medicare possibly pays for it. If you had two other means of trying to get ready, earn a rampathy, ask your doctor.

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@dove1
Rebuilder is $1,000. and chiropractors rip you off? Does it come with a money back guarantee if it doesn't help? Does it help numbness?
Jake

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@dove1

I use rebuilder three hundred for my peripheral Neurapathy
bath water 30 minutes in the morning, 30 minutes at night.
490 days don't go over for. On your level from 0 too 8 So you don't overstimate, do not want to do that. That's where I am at. Add to stop doing it for a week.
Start backup 5 minutes in the morning.
Don't go over. The number 4.
Rebuild yourselves through 300 at $1000.
I've seen it cheaper.
Do not go to a chiropractor they'll rip you off.
Medicaid, medicare possibly pays for it. If you had two other means of trying to get ready, earn a rampathy, ask your doctor.

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Hello @dove1, I would like to add my welcome to Connect along with @jakedduck1 and others. There is another discussion on the Rebuilder if you want to connect with others using the device.
--- THE REBUILDER for peripheral neuropathy: https://connect.mayoclinic.org/discussion/the-rebuilder-for-peripheral-neuropathy/

Do you mind sharing a little more about your neuropathy diagnosis and any other treatments you have tried?

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@johnwburns

I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren's syndrome.  I take gabapentin and duloxetine but pain isn't the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you'll have better luck with the chemo induced version.

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An RA doctor is not a nerve doctor. Go to the Neurologist.

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@ann707

I've posted this in a couple of places so forgive the replication, but I'm trying to get an answer. I have a question for anyone trying alpha lipoic acid. I just started using it and noticed that my urine has a fruity smell. I stopped taking it and it stopped. When I resumed the dosage it started again. So I know that is the cause. Anyone ever notice this?

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I have the same reaction; many supplements and pharmaceuticals impart odors to urine, usually without any negative consequences. But watch for other possible side effects. I also have problems with berberine (which is almost the equivalent of metformin). I take the latter because researchers have found that up to 40% of all idiopathic polyneuropathies ultimately demonstrate a glucose intolerance causation.

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@ann707

I saw a neurologist last week for EMG and no surprise I have idiopathic PN; big surprise, not!
He did suggest taking alpha lipoic acid and acetly-L carntine. Both of these reduce oxidative stress and improve nerve health. Does it work? Seems to help some people but but I figure it can't hurt to give it a try.
Has anyone else used this combination? Any suggestions as to dosage?

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The usual recommended dose of alpha lipoic acid is 600 mg per day. For acetyl-L-carnitine 500 mg per day and/or prpionyl-L-carnitine 1000 to 2000 mg per day. I take both as they have somewhat different pharmacokinetics, one possibly more effective for cardio, the other more effective for neuro. Some evidence they have synergies. You have to take them a couple months or more before expecting any noticeable benefit. I do think they have helped me a bit. Don't forget your B12 and D3.

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@proteusx

The usual recommended dose of alpha lipoic acid is 600 mg per day. For acetyl-L-carnitine 500 mg per day and/or prpionyl-L-carnitine 1000 to 2000 mg per day. I take both as they have somewhat different pharmacokinetics, one possibly more effective for cardio, the other more effective for neuro. Some evidence they have synergies. You have to take them a couple months or more before expecting any noticeable benefit. I do think they have helped me a bit. Don't forget your B12 and D3.

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I've actually only been taking 600mg ALA everyday. More because of scheduling than anything else. To early to be sure it is working but it 'seems' the tingling etc has decreased. Need more than a two day data points to be sure. I do use a tiger balm patch (capasin/menthol/camphor) on my feet so that may be contributing. I discontinued that for now so I can tell if the ALA is working.
Had my B12 and D3 measured and they are great.

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@proteusx

I have the same reaction; many supplements and pharmaceuticals impart odors to urine, usually without any negative consequences. But watch for other possible side effects. I also have problems with berberine (which is almost the equivalent of metformin). I take the latter because researchers have found that up to 40% of all idiopathic polyneuropathies ultimately demonstrate a glucose intolerance causation.

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Hello…I’ve had neuropathy for 7 yrs and am considered pre diabetic…a1c floating in 5.8-6.2 range. Drs haven’t suggested metformin. What was your A1c prior to meds? Can you tell if the metformin has had any effect on your neuropathy?

Steve

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@jakedduck1

@dove1
Rebuilder is $1,000. and chiropractors rip you off? Does it come with a money back guarantee if it doesn't help? Does it help numbness?
Jake

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Jake - when my PN first started, back in 2015-16, I went to a chiropractor who was starting a clinic for those with PN. got my interest. He is an MD. He hooked up this electronic devise which was to stimulate nerves in lower legs and feet. I sat in what I call a recliner. Wires with suction cups were hooked to my lower back, lower legs, ankles and feet. The "treatment' was 25 minutes long, twice a week. The following day, I had such lower back pain I could hardly walk. Did not go for 2nd treatment that week. Doc talked me into giving it another try so went following week. Same thing. I called him next day. He said that has "never happened before". I never saw him again. My daughter has success with a chiropractor so I'm not slamming everyone in that type of practice. The doc was fair, he never billed my insurance company and did not ask me for any payment. Hmmm...wonder why?? Ed

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