Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@rabbit10

Keep us updated. Good luck

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I to have tried all that you have mentioned as well as tens devices etc. and have found no real relief. Lots of snake oil salesman out there with magic creams, pills etc but I have yet to find any relief from the burning and glass/sand in your shoes sensations related to the affliction. Really destroys quality of life for sure and doesn’t appear to be Any miracles in sight!

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@rabbit10

Keep us updated. Good luck

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It has been suggested that I try cannabis but I have not been able to find a doctor that will sign for me. However, doctors say I have intractable pain and thus would qualify under state law however the problem is to find a doctor that is working with patients with such problems. Any suggestions appreciated.

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@rabbit10

Keep us updated. Good luck

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Hello @fonda, in Minnesota there is a state registry that you have to be listed in before you can get treatment using medical cannabis. I’m sure each state has their own rules/regulations. Here’s the link for Minnesota:
http://www.health.state.mn.us/topics/cannabis/index.html
I went to a Minnesota Neuropathy Association meeting last week and we had a guest speaker Dr. Gary Starr from LeafLine Labs (https://leaflinelabs.com/). He went through the process of how a person gets on the registry and becomes a patient. He also gave us the history of cannabis and how it works on the body to explain some of the common misunderstandings.

Can you share what state you live in? Maybe others who have tried it can share their story.

John

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@johnbishop

Todd, so sorry to hear about your wife’s troubles. You are doing the right thing exploring all options and like John Burns says – don’t give up hope. There also is a Facebook group – “Our Neuropathy Friends” that is quite active and has over 3000 group members. You might want to join the group and post questions there too. I’ve been struggling with my peripheral neuropathy for over 10 years but have just recently started searching for cause and possible treatments being one that hates going to the doctor. If you are an avid reader or like to read, I would recommend the book “Wahl’s Protocol” by Dr. Terry Wahl. She has an amazing story on her research into autoimmune diseases and how diet plays a part. I’m halfway through the book and am attempting to try the first part of the diet but I’m 73 and so set it my ways it’s a daily struggle. Good luck in your journey and please never give up. Know that there are others out there praying for you.

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One of my biggest frustrations is the fact that the main stream medical community seems to have little interest in working on treatments, remedies, cause and affect, cures etc. In my quest the last five years I have only had minimal interest shown by the so called specialists, I.E. Neurologists, major medical centers etc. in helping me with my issues. My local GP put in more effort than the neurologist that I was referred to and one major nationally renowned hospital even declined to even see me or review my case. If you have neuropathy everyone pretty much writes you off as a lost cause and you are told so in so many words. Sorry but nerve issues are really hard to treat, would rather concentrate on the illnesses, surgery etc. that we know we can be successful, makes for better PR. Easy to become disgruntled and depressed.

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@johnbishop

Todd, so sorry to hear about your wife’s troubles. You are doing the right thing exploring all options and like John Burns says – don’t give up hope. There also is a Facebook group – “Our Neuropathy Friends” that is quite active and has over 3000 group members. You might want to join the group and post questions there too. I’ve been struggling with my peripheral neuropathy for over 10 years but have just recently started searching for cause and possible treatments being one that hates going to the doctor. If you are an avid reader or like to read, I would recommend the book “Wahl’s Protocol” by Dr. Terry Wahl. She has an amazing story on her research into autoimmune diseases and how diet plays a part. I’m halfway through the book and am attempting to try the first part of the diet but I’m 73 and so set it my ways it’s a daily struggle. Good luck in your journey and please never give up. Know that there are others out there praying for you.

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Amen to that Tim…one of my biggest frustrations also and why I started being my own advocate. I don’t have the pain you have with my small fiber peripheral neuropathy but the numbness was getting worse until last year when I started taking a specific group of high quality (and over the counter) supplements. I started in September last year and the numbness was just below the knees. After a couple of months it was just above the ankles. I haven’t made any more progress with the numbness but at least it’s not getting worse so it is working to repair the nerves. It may not work for everyone but I had tried everything else and neither my primary care doc or the neurologist had anything that works for numbness. The problem with what they prescribe for pain – lyrica, gabapentin, etc.. can be worse than the neuropathy with their side effects and almost continual need to keep upping the dosage. Others in the same group have been on those pain drugs and have been able to taper off once they are on the full supplement protocol. I can only attest to the help I have received and that I too am a skeptic so very wary of scams. Whatever you do, don’t give up hope. Keep doing your own research and working with your doctor to hopefully find something that helps with the pain.

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@johnbishop

Todd, so sorry to hear about your wife’s troubles. You are doing the right thing exploring all options and like John Burns says – don’t give up hope. There also is a Facebook group – “Our Neuropathy Friends” that is quite active and has over 3000 group members. You might want to join the group and post questions there too. I’ve been struggling with my peripheral neuropathy for over 10 years but have just recently started searching for cause and possible treatments being one that hates going to the doctor. If you are an avid reader or like to read, I would recommend the book “Wahl’s Protocol” by Dr. Terry Wahl. She has an amazing story on her research into autoimmune diseases and how diet plays a part. I’m halfway through the book and am attempting to try the first part of the diet but I’m 73 and so set it my ways it’s a daily struggle. Good luck in your journey and please never give up. Know that there are others out there praying for you.

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One of the most frustrating areas in my treatment is the fact the NOBODY that I have seen in my treatment has done a thorough foot inspection, I E bone structure, scans, x-rays to see if there is anything structural that is adding to my pain issues. Other than look at my feet for sores, wounds etc., that is it. Metatarsal issues or the like could be an issue but who would know? Also any secondary pain med I take for muscle, lower back pain etc. seems to only aggravate/intensity my neuropathy pain. Can’t win.

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@johnbishop

Todd, so sorry to hear about your wife’s troubles. You are doing the right thing exploring all options and like John Burns says – don’t give up hope. There also is a Facebook group – “Our Neuropathy Friends” that is quite active and has over 3000 group members. You might want to join the group and post questions there too. I’ve been struggling with my peripheral neuropathy for over 10 years but have just recently started searching for cause and possible treatments being one that hates going to the doctor. If you are an avid reader or like to read, I would recommend the book “Wahl’s Protocol” by Dr. Terry Wahl. She has an amazing story on her research into autoimmune diseases and how diet plays a part. I’m halfway through the book and am attempting to try the first part of the diet but I’m 73 and so set it my ways it’s a daily struggle. Good luck in your journey and please never give up. Know that there are others out there praying for you.

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Sorry if this is a dumb question – have you seen a doctor that is a specialist in the foot area? I know Rochester Mayo Clinic has a pretty good reputation in the hand clinic downtown and I think it’s the same for the feet but I don’t know anyone that has seen them. I’ve been to the hand clinic for carpal tunnel.

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It’s nice to see some research into trying to fix the problem and not the symptoms…

Nerve wrapping nanofiber mesh promoting regeneration – National Institute for Materials Science (NIMS), February 28, 2017:
http://bit.ly/2n0tcu5
New Research may pave the way for peripheral nerve damage repair – Researchers from Plymouth University are the first to identify the role of a bodily protein in peripheral nerve self-repair, Journal of Cell Biology, 30 January 2017:
http://bit.ly/2n3yGAm

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@johnbishop

Todd, so sorry to hear about your wife’s troubles. You are doing the right thing exploring all options and like John Burns says – don’t give up hope. There also is a Facebook group – “Our Neuropathy Friends” that is quite active and has over 3000 group members. You might want to join the group and post questions there too. I’ve been struggling with my peripheral neuropathy for over 10 years but have just recently started searching for cause and possible treatments being one that hates going to the doctor. If you are an avid reader or like to read, I would recommend the book “Wahl’s Protocol” by Dr. Terry Wahl. She has an amazing story on her research into autoimmune diseases and how diet plays a part. I’m halfway through the book and am attempting to try the first part of the diet but I’m 73 and so set it my ways it’s a daily struggle. Good luck in your journey and please never give up. Know that there are others out there praying for you.

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Mayo was where I was denied even an appointment.

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@johnbishop

Todd, so sorry to hear about your wife’s troubles. You are doing the right thing exploring all options and like John Burns says – don’t give up hope. There also is a Facebook group – “Our Neuropathy Friends” that is quite active and has over 3000 group members. You might want to join the group and post questions there too. I’ve been struggling with my peripheral neuropathy for over 10 years but have just recently started searching for cause and possible treatments being one that hates going to the doctor. If you are an avid reader or like to read, I would recommend the book “Wahl’s Protocol” by Dr. Terry Wahl. She has an amazing story on her research into autoimmune diseases and how diet plays a part. I’m halfway through the book and am attempting to try the first part of the diet but I’m 73 and so set it my ways it’s a daily struggle. Good luck in your journey and please never give up. Know that there are others out there praying for you.

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Sorry to hear that.

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Is anyone on here dealing with CIDP (chronic inflammatory demylenating polyneuropathy )?

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I am a Vietnam War Vet with agent orange we think ha ha..I have Peripheral neuropathy of the feet and spine. Med’s Turmeric Curcumin 2000 mg. or more with pepper.Plus Gabapentin 600 mg.Three times a day. But the best thing that helps me is my Laser TouchOne for pain.So what ya say! HOOT””

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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Gabapentin 300 mg. at bedtime works wonders – along with 300 mg. twice a day

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Mine has come on suddenly and my doctor doesn’t know what is causing it. Have 2 herniated discs in
Lower back so he is presuming that is why. I’m not sure it is. The buzzing and vibrating and numbness freak me out. Going to PT now. Are there any natural products that help?

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I was diagnosed with Transverse Myelitis in 1999 and diabetes in 2011. Burning, pins and needles in my feet and calves, I have tried Verizon’s anti depressants but the side effects are worse than the pain. The pain gets worse when I get too hot or when it gets cold and damp outside. Just started using magnesium oil spray, I how not really noticed a difference yet.

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