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Neuropathy - reccomend vitamins & supplements

Discussion in 'Alternative Treatments' started by Fo, Jan 31, 2019.

  1. SimonCrox

    SimonCrox · Well-Known Member

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    Hi,
    It is useful that your GP has checked B12 and thyroid levels - it would be silly to miss something so treatable; although once established, it is not generally possible to reverse the nerve damage, but one can ameliorate the pains.

    Vitamin D is important - cross-sectional studies show that neuropathy is associated with low vitamin D levels, and one paper showed benefit for the pain (but this study was uncontrolled).

    Studies have shown benefit from 600 mg Alpha Lipoic Acid per day; I have proven B12 and Vit D deficiency so I take 1 mg hydroxycobalamin each 3 months IM ( since I have a proper deficiency, I am going for decent treatment - I give the IM jab myself - easier than going to GP) and 800 u cholecalciferol capsules each day and these stopped my neuropathy progressing. I take the 600 mg Alpha Lipoic Acid per day since this is the dose in one review that balanced benefit and side effects - I can take big capsules etc but these are rather massive and next time I will get the 300 mg capsules (two per day)

    The management of the pain of neuropathy with drugs is fiddly, and is a case of trial and error, despite several classes of useful drugs.

    Best wishes
     
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  2. Juicetin

    Juicetin Prediabetes · Well-Known Member

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    Hi Simon, do you take R-ALA or the racemic R/S-ALA variety?
    The price of R-ALA has risen dramatically in the UK due to exchange rate, however the racemic variety is still widely available competitively priced, although it's effectiveness is supposed to be questionable.
     
  3. SimonCrox

    SimonCrox · Well-Known Member

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    Thanks for your advice. I probably have the mixed variety - I think as you say that the evidence is more robust for the R variety, so will get that from Amazon next time. Price rise is yet another Brexit Dividend, I guess.

    Best wishes.
     
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  4. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    @SimonCrox I've been thinking off and on all day about your statement "although once established, it is not generally possible to reverse the nerve damage". If the body can grow new blood vessels and regrow nerves, why not? I also wonder...if you have a B12 deficiency, is it possible that you have other B vitamin deficiencies? Have you considered adding good quality B-complex to your alpha lipoic acid, B12, and D regimen to stop the progression and/or reverse manage your neuropathy?
     
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  5. SimonCrox

    SimonCrox · Well-Known Member

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    Hi, thanks for your advice about vitamin B group supplementation - I will take these again. But one should be aware that large doses of B6, pyridoxine, also causes neuropathy itself! Life just seems to get more complicated.

    https://www.ncbi.nlm.nih.gov/pubmed/3630649

    Reading around your first question, I see that folate deficiency (which I also have - poor diet) is associated with neuropathy, so I will take that. https://www.ncbi.nlm.nih.gov/m/pubmed/6255553/?i=8&from=/16530131/related

    Regarding poor outcomes in established neuropathy, this was something that I jsut accepted from my teachers without questioning - a mistake. So clinically, one generally arrests the neuropathy from B12 deficiency

    https://www.jns-journal.com/article/0022-510X(84)90147-3/pdf

    Sometimes there is dramatic imporvement, but this is uncommon, hence why case reports are published on these cases eg:- https://www.ncbi.nlm.nih.gov/m/pubmed/16530131/

    In a nutshell, there is the nerve cell body, the axon which is the fibre pathway that transmits the messages, and all wrapped up in an insulating myelin sheath made by Schwann cells (although some nerves don't have this). Some neuropathies damage the myelin sheath and some damage the axon.

    If the nerve cell body is OK, and the myelin sheath is intact, then the nerve cell body can regrow the axon fibre down the myelin sheath, but if the nerve cell body is dead, it cannot regenerate and if the myelin sheath is damaged also, then the nerve cannot grow its axons down the correct pathway. It has been proposed that it is the misdirection of regenerating nerves that leads to neuropathic pain. see https://en.wikipedia.org/wiki/Neuroregeneration

    I think that a lot of regeneration work is done on cut nerves, but I am still waiting to regain the sensation in my left index finger after severing the nerve with a penknife over 50 years ago. In vitamin B12 deficiency, the B12 deficiency affects all parts of the nervous system including the nerve cell bodies, so perhaps this is why B12 neuropathy often does not do well.

    There are probably several mechanisms behind diabetic neuropathy such as glucose toxicity, sugar alcohol toxicity, free radical damage, but Prof Solomon Tesfaye has shown that hardening and blocking of the arteries to nerves is a significant cause which we cannot reverse.

    I am not sure if I have answered your question adequately - sorry.

    Best wishes
     
  6. Brunneria

    Brunneria Other · Moderator
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    Bernstein has some pretty definite views on the possibilty of reversing neuropathy.
    But says it takes a level of blood glucose control that my body finds unachievable.
    Mind you, The stabbing pains in my feet only appear when my blood glucose is variable, and disappear when my blood glucose stabilises again.
    But I can’t speak of anything other than my own very mild pain.



    Edited to clarify the point that I think Bernstein is specifically mentioning diabetic neuropathy, rather than neuropathy caused by other things.
     
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    #26 Brunneria, Feb 8, 2019 at 1:04 PM
    Last edited: Feb 9, 2019
  7. SimonCrox

    SimonCrox · Well-Known Member

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    I'm sure that other studies have shown that fluctuating glucose levels cause pain, and I have certainly seen folk whose pain from neuropathy resolves when their glucose levels are improved and stabilised. Also some folk get an acute pain in a root distribution (ie a bit like shingles pain) in association with acutely high glucose levels, which resolve when the glucose levels stabilise.

    I guess there is a difference between symptoms (and some say that many pains are worsened by high glucose levels) and nerve function ie degree of neuropathy.

    Thanks for video

    Best wishes
     
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  8. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    @SimonCrox I have a 30 year old scar from surgery. Just checked. It's still numb.

    In an effort to better understand the perspective you're writing from, I went back and surveyed your posts. Thank you for so graciously taking the time to share your knowledge and experience here. It's contributors like you that keep me coming back to this forum.

    It sounds like your neuropathy is due to a B12 deficiency (and you don't know how long you had it, but have addressed it and continue to do so). My search for information on neuropathy has been limited to diabetic related neuropathies, so I don't know what you can reasonably expect from various therapies and treatments for relief from your symptoms.

    The first diabetes group I joined was filled with people who were suffering from peripheral neuropathy. It was awful. Afterward, I searched online and found three healthcare providers in the US who were successfully treating it, two of whom wrote what they were doing in book form. I bought and read the books, then shared them at the next meeting. The members passed them around the table, a few flipped through the pages, then returned them to me. I was completely dumbfounded. None showed any interest. The meeting resumed, and I listened as one member described the process he was going through to have his PN evaluated and diagnosed.

    I think knowing the research is very helpful - (your example of taking too much vitamin B6 causing neuropathy is an excellent example of learning what to avoid), but I also think clinical experience is equally helpful, and we have some incredible innovators in the healthcare field. Additionally, I think having an openness to trying new strategies and building from there is the better approach.

    I don't know if this will help those who are reading this, but there's numerous clinics in the USA as well as innovative clinicians who are treating neuropathy. Here's a few examples:

    Perhaps this list will provide therapies to research...

    [​IMG]

    Learn about Michael J. Fitzmaurice, MD, Peripheral Nerve Surgeon here... http://www.neuropharmaca.com/dr-michael-fitzmaurice/ Read the list of nutritional supplements he uses in his formulation here - (scroll down)... http://www.neuropharmaca.com/products/neurogen/ You can also visit his website to learn more about his clinic, Fitzmaurice Hand Institute.

    I think though that finding the right diet and exercise regimen is the foundation for any of the therapies and treatments used. I hope you continue your search and find the "magic" combination that works for you.
     
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    #28 Winnie53, Feb 9, 2019 at 2:17 AM
    Last edited: Feb 9, 2019
  9. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    Yesterday, I wrote the above post then removed a lot of it's content because it was too focused on me and not enough on neuropathy.

    I began surveying the internet to find clinicians who are making a difference in the lives of those suffering from neuropathy. On YouTube (lectures) and Amazon (books), I was pleased to find one I believe to be worthy of sharing here.

    But before continuing, I really want to stress that while using nutritional supplements has played a significant role in restoring my health over the last 4 years, I understand that it's not possible to "medicate" or "supplement" our way out of the wrong lifestyle choices. There is no "magic pill". While I did and still do take nutritional supplements, I also made significant diet and lifestyle changes too.

    I am not providing this information to promote any one clinician or treatment. Rather my hope is that by learning more about how these clinician's work with their patients, you'll be able to piece together therapies and strategies for yourself that are helpful.

    Introducing Dr. Michael S. Veselak...

    From the website: "Dr. Michael S. Veselak, DC [Doctor of Chiropractic], BCIM [Board Certified in Integrative Medicine], CFMP [Certified Functional Medicine Practitioner] practice focuses on chronic health conditions. He evaluates each patient from a structural, metabolic and neurological viewpoint. This unique approach allows him to successfully manage difficult conditions such as peripheral neuropathy, spinal stenosis, autoimmune conditions, thyroid disorders and individuals suffering from chronic pain. He has lectured extensively on the subject of chronic pain and recently wrote a best seller book on Peripheral Neuropathy titled “Understanding, Managing and Improving Peripheral Neuropathy.” He is Board Certified in Integrative Medicine and a Functional Medicine specialist and has been in private practice for over 30 years in Camarillo, California. His office incorporates advanced therapies to include Spinal Decompression, Neurofeedback, Cold Laser, PEMF, Hako-Med and Brain Based Neurological Therapies."

    Dr. Veselak has specialized in treating peripheral neuropathy for the last 10 years of his 30+ year private practice. He led and facilitated a local neuropathy support group for a couple of years. In 2017, he self-published the book, "A Complete Guide To Understanding, Managing & Improving Your Peripheral Neuropathy".

    He has dozens of videos on YouTube. To view his other videos, click on "YouTube" at the bottom of the video to watch on YouTube, then click on his picture under any of his videos. This 15 minute video provides the best overview of how he works with patients...



    I also found his 8 minute video, "Neuropathy Exam" interesting. It's in the "Uploads" section.

    Here's the book he self-published in 2017 on peripheral neuropathy... https://www.amazon.com/gp/product/1...4df-15aac5223b10&pf_rd_r=CH3MJWJX8FS362N9WF68

    I hope some of you find it helpful.
     
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  10. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    I also want to share a testimonial of a novelist who developed periperhal neuropathy. After many doctors and many different misdiagnoses, he eventually learned that he had a B12 deficiency. Unfortunately, while he did improve with B12 injections, some symptoms remained.

    In this video, he shares how fasting a few days a month last year over multiple months, he has regained more feeling in his hands and feet. He believes this is due to "fasting and autophagy (stem cell regeneration)".

     
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  11. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

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    Just to chip in to this detailed thread, that my father in law who is disabled by his t2 neuropathy finds that cannabis oil works better for pain relief than his prescribed painkiller.
    Not a cure but the R-ALA, anti oxidant and good bg control route requires patience over time. Be interested to know if anyone else has tried this and found it helpful.
     
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  12. Jim Lahey

    Jim Lahey I reversed my Type 2 · Well-Known Member

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    I reversed my very very nasty foot neuropathy through diet and fastidious glucose control. Putting none in and draining it all out.

    I realise it’s n=1, but it shows that it’s certainly possible.
     
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  13. Jim Lahey

    Jim Lahey I reversed my Type 2 · Well-Known Member

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    Makes sense. I vaped raw cannabis herb as pain relief and it was profoundly effective for me.
     
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  14. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    Always saddened to hear someone's suffering.

    I'd definately add a good quality, well balanced B-complex to the 600 mg of Alpha Lipoic Acid. (Is the dosage for R-ALA the same? I don't know). I'd also check to insure his vitamin D level is in a good range. (If he's not supplementing, it likely will be very low).

    Those with type 2 diabetes can get their blood glucose levels down with the low carb diet in the 30 - 40 carb a day range, or with eating two meals a day within a 6 - 8 hour eating window (intermittent fasting), within weeks, or in no more than a months time.

    Perhaps your father-in-law would benefit from reading a book on peripheral neuropathy. In the meantime, I'd choose cannabis oil over medication (due to it's unwanted side effects). Members of the diabetes group I participated in briefly a few years ago reported excellent results with cannabis oil, but they also reported that they tried different oils until they found the one that worked best for them.
     
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  15. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    The earlier the peripheral neuropathy's progression is stopped, possibly reversed, the better. He has time, but as with any progressive condition, sadly, there is a point of no return. Not what he would want, I'm sure.
     
  16. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

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    No indeed. It really gets him down. I think he has sporadic pushes to get his bgs down. The irony is that my mother in law is obese and needs to lose weight to get knee surgery (cannabis oil did not help) although she is metabolically healthy. It would be great if they could stick at it together!
    So far I've given him Lester Packer s book The Antioxididant Miracle plus Patrick Holford Say No to Diabetes (low Gi diet is enough for him to get down to just metformin). I think he's lost the energy/spirit to digest new info for now.
    Thank you for all your great information posted here though.
     
  17. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    @NicoleC1971 That's great that your mother-in-law is metabolically healthy. I wish more people understood that "obese" doesn't always equal "unhealthy"!

    It's really hard to overcome the food cravings by eating a low carb diet in the 50 - 130 or 150 carbs/day range or a low glycemic diet instead of the ketogenic diet (which ranges up to 40 - 50 carbs/day) if still eating any processed foods with their inflammatory refined carbs, sugar, and highly processed seed oils. But eating real, whole foods is a GREAT beginning.

    The beauty of ketosis is that you no longer feel the need to eat every 2 hours. Before beginning the keto diet, within 1 1/2 to 2 hours after every meal I was already thinking about what I was going to eat next. It was just miserable. I thought about food all the time. But a lot of people have a long history of dieting, losing weight, then gaining it back so have given up on dieting.

    Enter the magic of fasting, another way to achieve ketosis and improved metabolic health.

    Canadian nephrologist Jason Fung, frustrated with the standard of care for diabetes because it doesn't work, began having his chronically ill patients use fasting, in part because doctors get in trouble giving dietary advice, but also because fasting is a lot easier for patients to do and achieves dramatic results quickly without changing the diet.

    Mike Mutzel, High Intensity Health, flew out to Toronto last year to interview Dr. Fung. While I've followed his work for four years, I was hesitant to try it. After listening to the interview below THREE to FIVE TIMES [giggle] I decided to give it a try.



    I stopped eating breakfast so I could do a 16 - 18 hour fast between dinner to lunch daily for ten days. If I felt a uncomfortable, I drank a glass of water then felt fine again. It was so easy and the results were amazing.

    My fasting blood glucose level dropped to as low as 100 mg/dL (5.5 mmol/L) and I lost 5 pounds (0.35 stone). (I should add here this wasn't due to water weight loss because I'm fat adapted and already in ketosis).

    Now that isn't the way Dr. Fung does it with patients who need to reduce their weight, fasting insulin level, and glucose levels. For them he has patients alternate between eating lunch and dinner only with eating dinner only during the weekdays and eating normally on the weekend. I can't remember though if the dinner only days are M, W, F or Tu, Th. (I loaned my book to a type 1 friend who's trying to lose weight.) That's what I'm going to do next.

    Now I should also add there's an upside and a downside to lowering the insulin and glucose levels... The nerves begin to heal but they hurt more, but only temporarily. This morning, day 11, I woke up with a burning sensation in my toes. Same thing happened when I started the ketogenic diet 4 years ago. I developed a burning sensation in the top of my right foot that lasted for a few weeks, then I was fine again.

    The upside is that he may be able to stop or reduce the metformin too. And the neuropathy symptoms should begin to improve.

    I realize some people are readers and some are not. For those who prefer watching videos to reading print, there are a lot of videos by Jason Fung on YouTube. That would be a good place to learn more about the benefits of fasting and how to do it, but at minimum I'd suggest having 1 of his 3 books on hand as a reference guide prior to fasting to answer questions as they come up, The Complete Guide to Fasting (2016), but here's the link to all three of his books in the UK... https://www.amazon.co.uk/l/B01BT8K6...&rfkd=1&shoppingPortalEnabled=true&sr=8-2-ent

    In addition, Dr. Fung has a website that's free. Here's a fun article from 2018 on the site... https://idmprogram.com/what-fasting-is-not-crazy-batsh-stupid/

    Keeping your in laws in my thoughts. Wishing for them improving health.
     
    #37 Winnie53, Feb 10, 2019 at 10:23 PM
    Last edited: Feb 10, 2019
  18. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    As I was eating my last jar of minestone soup for lunch today, I recalled that this is the soup I always make in big batches when my health has taken a down turn and I want to get back on track. It can be made vegan/vegetarian by using a vegetable broth and replacing the mild italian ground sausage and parmesan cheese with something else, but I like it best with the beef broth, sausage and cheese. I freeze it in 16 ounce peanut butter jars with straight sides. It takes a day to thaw in the fridge, 2 to 4 hours to thaw in a bowl of hot water, but is a great "grab and go meal" rich with nutrients and fiber...

    Minestrone with Mild Italian Ground Sausage

    Makes eight 12 ounce (375-milliliter) servings.

    In a fry pan, begin cooking 1 pound of mild Italian sausage on low heat, breaking it up as it cooks.

    In a 4.5 quart (4.25 liter) Dutch oven or large sauce pot, sauté vegetables and water on medium to high heat, stirring every 2 minutes or so, for 8 to 10 minutes or until cooked down but still crisp tender.

    3 cups (750 milliliters) red cabbage - I cut into 1/2 inch (or 1 1/2 centimeter) slices, then into 1 1/2 inch (4 centimeter) lengths
    2 cups (500 milliliters) cubed zucchini (known as courgette in the UK)
    1 cup (250 milliliters) sliced cauliflower
    1 medium onion, diced
    1 medium carrot, sliced
    2 large ribs celery with leaves, sliced
    1/2 cup (125 milliliters) water*

    Take one bunch of fresh spinach, remove stems, place leaves in a extra large bowl with lots of water. Remove spinach from bowl, repeat until water and bottom of bowl is clean. On a cutting board, mound spinach on the board and make 1" (3 centimeter) slices.

    Add to vegetables:

    mild Italian ground sausage, cooked, meat and fat
    fresh spinach leaves, prepared and rinsed (or 10 ounces frozen) (300 grams)
    4 cups (1 liter) beef broth
    1 teaspoon salt
    1/4 teaspoon pepper

    Bring to boil; reduce heat, cover and simmer, stirring occasionally, 20 - 30 minutes or until vegetables are barely tender.

    Add to vegetables:

    1 can (16 ounces; 500 milliliters) tomatoes, cut up - (I prefer diced tomatoes with Italian herbs)
    1 can (16 ounces; 500 milliliters) red kidney beans, drained and rinsed

    Cook uncovered over medium heat about 10 minutes or until beans are heated through and flavors blend.

    I ladle 12 ounce (375 milliliter) servings into glass jars and store in freezer or refrigerator so it's easier to grab and go then heat for lunch or dinner. Just leave a thumb's width of space between the top of the soup and the top of the jar if freezing.

    Serve hot in a large bowl topped with freshly grated parmesan cheese.

    *I use water instead of highly refined, damaged, omega-6, seed oils because most people don't have a healthy cooking oil on hand that tolerates high heat during cooking.

    This is the soup I had for most of my lunches during my intermittent fast. For extra protein and fat, I had a cup of raw nuts on the side. I like raw pecans, almonds and walnuts.

    Hope my conversions are correct. If not, apologies...
     
    #38 Winnie53, Feb 11, 2019 at 12:01 AM
    Last edited: Feb 13, 2019 at 5:00 AM
  19. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    As I continue to survey books on neuropathy, and I have a few on the way that I plan to read and hopefully review here, I was initially excited when I found this book, releasing on March 5th, 2019, until I read the back cover:

    Small Fiber Neuropathy and Related Syndromes: Pain and Neurodegeneration

    This book provides comprehensive coverage of small fiber neuropathy (SFN), from diagnosis to therapy. It focuses on nerve degeneration and neuropathic pain, and their underlying pathology, physiology, psychophysics, genetics and imaging. In particular, this book describes and discusses the major advances in diagnostic techniques for assessing SFN. These include skin biopsy, evoked potentials, quantitative sensory testing and functional studies, as biomarkers of SFN.

    SFN is a common peripheral nerve disorder, but was often overlooked due to a lack of objective and specific diagnostic tests for the assessment of small nerve fibers. These fibers mediate thermal sensation, pain detection (nociception), and autonomic regulation. Major symptoms of SFN include neuropathic pain, impaired sensation and autonomic dysfunction. Neuropathic pain poses a diagnostic challenge to clinicians, an essential step for selecting appropriate treatment to relieve suffering.

    SFN frequently develops in systemic diseases such as diabetes mellitus, following chemotherapy, infections etc., or presents as a major feature of various genetic neuropathies (e.g. channelopathy and familial amyloidosis). In addition to describing these conditions which lead to SFN, this book also describes related syndromes of neurodegeneration and pain, including fibromyalgia, visceral pain and hypersensitivity.

    This definitive book covers both clinical aspects and research progress, which provides in-depth and up-to-date information on SFN. It would be immensely useful for clinicians, neurologists, neuroscientists, diabetologists, and pain specialists.

    ----------

    The editors are impressively credentialed and are from around the world: Taiwan, UK, USA, and Germany.

    My problem? The focus of the book is on nerve degeneration, pathology, physiology, psychophysics, genetics, imaging, and diagnostic techniques to be used during assessment for the purpose of "selecting appropriate treatment to relieve suffering" which I'm going to assume is pain management, which we already have. [sigh].

    Please don't misunderstand, while there's certainly value in the above information, I have to ask... Why can't the academics and researchers also dedicate time and resources to identifying and studying known therapies. treatments, and lifestyle strategies in current use that appear to work, and investigate how and why they work, and include that information in their book too?

    Honestly, if I had neuropathy, I wouldn't wait on these folks to figure it out and get that information out there.
     
    #39 Winnie53, Feb 14, 2019 at 2:33 AM
    Last edited: Feb 14, 2019 at 5:05 AM
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