Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

My wife and I are seriously considering moving to another state if it means we might find a good pain management doctor or medical practice We currently live in Kentucky, and have found there are very few doctors working in the field of chronic and "non curable" pain. There are plenty of doctors that are willing to do back-surgery to resolve pain stemming from back and spine problems, but next to no one willing to get involved with patients with chronic neuropathic pain. There are none in my small town, and only one single clinic in Lexington, which is an hours drive way.

Would anyone like to recommend their state for being a good place for sufferers of severe peripheral neuropathy? I would love to know which states are good, and even better if someone could recommend a doctor. I am hoping to find a practice and/or doctor that has taken a genuine interest in the treatment of neuropathy.

Thank you sincerely, Rob

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As Ray said, EB-N5 is good. You can get it on Amazon. One of its major ingredients is alpha-lipoic-acid. OPC3 is good for small blood vessel flow. You can get that on shop.com. I also use a TENS unit made by Oxiline. Oxiline.com
Keep walking. Compression ankle sleeve by Copper helps. Keep researching. My best!

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I’ve started a new protocol as of yesterday very simply NMN / RESVERATROL /PENTADECA ARGINATE(also known as alpha Lipo acid) methylene bluel I also drink a shake every day strawberries blueberries bananas last but not least NEUROTURNA capsules 1200 mg four of them a day little apple cider vinegar and a scoop of optic greens 50. it’s a whole lot of things to drink or swallow in the morning all those products I recommended through your research. I’ll let you know how it goes like I say it’s like chicken soup couldn’t hurt.

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Just to be clear on my last comment this is something I’m doing. I am suggesting you do your research and if any of these products work for you all well and good.

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@willgranger1127

As Ray said, EB-N5 is good. You can get it on Amazon. One of its major ingredients is alpha-lipoic-acid. OPC3 is good for small blood vessel flow. You can get that on shop.com. I also use a TENS unit made by Oxiline. Oxiline.com
Keep walking. Compression ankle sleeve by Copper helps. Keep researching. My best!

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Hello,

As a footnote to this conversation: EB-N5 contains Vitamin B6. That's of concern to many people. As it was explained to me, there are two sorts of B6: pyridoxine hydrochloride and and pyridoxal phospahte.

The former, when taken in excess, can aggravate or add to PN symptoms; that's understandingly of concern to us PNers. The latter, however, the pyridoxal phosphate, is water soluble and has not been shown to create or add to PN symptoms. My two neuro docs endorse EB-N5.

I say all this not as a physician but as a fellow PNer, has done lots of armchair reading, has been using EB-N5 for going on two years, and whose PN––for whatever reason (possibly not the EB-N5)––has been in abeyance.

Ray (@ray666)

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@ray666

Hello,

As a footnote to this conversation: EB-N5 contains Vitamin B6. That's of concern to many people. As it was explained to me, there are two sorts of B6: pyridoxine hydrochloride and and pyridoxal phospahte.

The former, when taken in excess, can aggravate or add to PN symptoms; that's understandingly of concern to us PNers. The latter, however, the pyridoxal phosphate, is water soluble and has not been shown to create or add to PN symptoms. My two neuro docs endorse EB-N5.

I say all this not as a physician but as a fellow PNer, has done lots of armchair reading, has been using EB-N5 for going on two years, and whose PN––for whatever reason (possibly not the EB-N5)––has been in abeyance.

Ray (@ray666)

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My sister is having good results with EB-N6. The ingredients list is slightly different, but EB-N5 sounds like the best choice with your two neurologists recommending it. I am planning to order it soon. Thanks for the additional information.

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Living with neuropathy, I wake up every morning and wonder what symptoms are going to visit me that day or that week I equate my symptomsto my body being a voodoo doll and the neuropathic voodoo doctors decide where they’re gonna place their pins when I try to express to people who don’t suffer from this condition They can’t fully comprehend the pain and frustration. I live with on a daily basis, trying to explain it to people I sometimes get the feeling that they think I’m a hypochondriac, which is also frustrating this post is me just having a frustrating day. Feeling overly tired with a dash of brain fog and cramps throughout my body so what am I gonna do? I’m gonna put on my earbuds. Listen some loud music. Take my daily dosage of medication and just keep on going sorry just felt like
Venting

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@cheyne

Hi,
As one who does not take medication for pain there can be more complex reasons than just not wanting to take medication. For myself anything but opioid medication causes more damage than it cures so I'm stuck with the likes of codine and have no wish to become addicted. Believe me if addiction wasn't an issue I'd be taking medication rather than sucking up the pain associated with Autonomic polyneuropathy. With ANS a rule of thumb is to do what ever it takes to manage the symptoms, as you said there is no cure but there is also no treatment know either, just playing with the symptoms is all that can be managed.
Cheers

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I keep reading that topical pirenzepine has been approved,when is it likely to be available. Failed promises are so discouraging.

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I am dealing with what my neurologist says is periodontal neuropathy. I am experiencing some muscle loss in my legs and numbness in both feet. I am also dealing with foot-drop in both feet. My doctors have ran every type of blood test associated with neuropathy and every test came back normal. I have also had several MRIs, and scans to identify what is causing my problems and every test came back normal. My neurologist is at a loss as to what is causing my problems.
The next step he wants to do is a nerve and muscle biopsy.
I wanted to check to see if anyone has experienced these type of conditions before I go with the biopsy route.

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@willgranger1127

My sister is having good results with EB-N6. The ingredients list is slightly different, but EB-N5 sounds like the best choice with your two neurologists recommending it. I am planning to order it soon. Thanks for the additional information.

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Hi, William

I know I looked up EB-N6's ingredients way back when it had been first suggested I try its sister-supplement, EB-N5, but I no longer remember the difference.

You mention possibly ordering some EB-N5. Have you checked to see that you can order EB-N5 without a prescription? I've been getting my EB-N5 under the aegis of my neurologist's prescription.

Also, I wouldn't jump to order without a neurologist's blessing. I believe it's changing and before long these medicinal foods will be generally available without a doctor's involvement; at least, that's what I've been hearing.

Keep me posted, will you?

Cheers!
Ray (@ray666)

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