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Help in dealing with neuropathy

Discussion in 'Diabetes Complications' started by Junior_Jones, Apr 1, 2015.

  1. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    After looking at all three formulations, Neuro-gen uses 2,000 mcg Methylcobalamin (B12) and Neurogen uses 1,000 mcg Methylcobalamin (B12) a day so between these formulations, the range for Methylcobalamin is 1,000 to 5,000 mcg. I personally prefer to start with a more conservative dosage, then give it time to work.

    In addition, all three formulations use Benfotiamine (B1): Neuro-gen uses 250 mg a day, Dr. Sullivan uses 400 to 600 mg a day. I listened to and read the testimonials, and it sounds like it takes up to 3 weeks for it to begin working. As I recall, 600 mg alpha-lipoic acid, divided into three 200 mg doses, was used in the studies.

    My hope, by posting this information here, is that those who are developing diabetic neuropathy will try these nutritional supplement strategies, in combination with LCHF/paleo diet, exercise, and low blood glucose levels, to restore their damaged nerves. It saddens me greatly that too many doctors offer pain management only for peripheral neuropathy when there have been studies showing for more than 10 years that specific nutritional supplements reverse or reduce neuropathy symptoms in many cases.

    The information on what to do is out there. It's just a matter of people trying the protocols and reporting their outcomes here or elsewhere on the forum. Dr. Sullivan provides a good, concise overview of available treatments and what's possible here...

    http://nervepainhelp.com/peripheral-neuropathy-treatment/ :)
     
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    #81 Winnie53, Jul 6, 2015 at 1:57 PM
    Last edited by a moderator: Jul 6, 2015
  2. Tim55

    Tim55 Type 2 · Well-Known Member

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    Hi Winnie53

    Amazing stuff you keep finding here - had a long day out yesterday so still catching up.

    As a general rule I do not like taking medication of ANY type, probably should have gone to the Docs long before I did when I started noticing symptoms, but I have always been a bit nervous around the medical profession!

    I'm sure I read somewhere that type 2s do not absorb B12 as efficiently as non diabetics and therefore normal levels may actually be insufficient, so while I agree it is foolish to take things you don't need I think it is worth trying the supplements out, at least for a few weeks .

    Particularly since it appears most tests for B12 are actually somewhat unreliable.

    I should perhaps say that I am no medical man myself, but I am a qualified (chartered) Chemist, but that is a general qualification in chemistry, not pharmacy. I do know a fair bit about certain weedkillers, but little about the human body.

    Interesting that B12 deficiency is also linked to cognitive difficulties and mild depression - looking back, I could decide I feel better about those two aspects of my well being since I started with ALA and B12, although I am aware that it is very easy to read up on symptoms and decide you have every disease going.....

    I am going to continue with my present regime for a few weeks now and leave the methyl B12 alone for now.

    Cheers

    Tim
     
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  3. Tim55

    Tim55 Type 2 · Well-Known Member

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    Hi There

    Update.

    I have now been taking ALA, B!2 and Benfotiamine for around two and a half weeks and I firmly believe they are helping with my neuropathy.

    They are certainly helping with my bad knee, and my general BS levels appear to be trending down slightly. This might be because the improvement to my knee has meant I am more active than I was and adding the Benfotiamine has definitely helped.

    i have 95 data points for the period i have been taking supplements and they average 5.51.

    One rogue result of 8.1
    None in the 7s
    13 in the 6s
    74 are 5 point something
    7 begin with a 4.

    I am continuing to to take them but i am considering swapping from B12 to the methyl form while away on holiday. This is because I am going down to the Costa Del Sol where the temperatures are very high and i expect to be drinking a lot and losing a lot of fluids.

    Under these conditions I fear the water soluble form will merely be rapidly flushed out while the lipid soluble form should not be as readily lost.

    leastways, that's my theory......
     
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  4. O'Brien_M

    O'Brien_M Type 2 · Newbie

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    I'm like you I don't like taking pills its bad enough taking what I take daily. I wish you well.
     
  5. O'Brien_M

    O'Brien_M Type 2 · Newbie

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    Hi
    Hi winnie53, I was just wondering if you know of treatment for Lymphodema in my left leg? I sometimes get cellulitis and have to take a course of antibiotics. Look forward to hearing from you
     
  6. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    @O'Brien_M Thank you for asking. I'm not familiar with the treatments for lymphedema, but after surveying for information about it here...

    https://en.wikipedia.org/wiki/Lymphedema

    and here...

    http://www.amazon.com/gp/search/ref=sr_pg_1?rh=i:aps,k:lymphedema&keywords=lymphedema&ie=UTF8&qid=1438353643&spIA=B00I5T8KMS,B00HLRC1AM,B00U1T1CX4,B00MU6PHUU,B00MU6PA9S,B00U1T18VA

    I wonder if this is why my feet swell in the summer. This has been an ongoing issue for me for ten years or so. When I went to the doctor, he ordered an ultrasound to check blood flow in both legs, which was fine. I don't understand why the doctor didn't tell me about his condition. Perhaps I should have been seen again when my swelling was active so he could have pressed on the skin. Not sure if this is a heart issue or a lymph system issue for me.

    After reading the Wikipedia article, I wonder if swimming daily would help. That would be a question I'd ask a therapist specialized in working with those who have lymphodema. The Wikipedia article also provides a review of quite a few techniques, therapies, and surgical procedures.

    I have multiple health conditions. The way I attack the problem is to visit websites and discussion forums, read books with good reviews on Amazon, and attend online summits or conferences. Note that it's often possible to buy recordings from conferences. It takes a lot of time, but I can't afford to see a lot of specialists and have a lot of expensive testing done, so in addition to some medical consultation and evaluations, I engage in a lot of self-study. :)

    This website looks interesting. Might be a good place to start... https://lighthouselymphedema.org/home/ They may know of organizations in your country too.

    What have your learned so far? How well are you networked within the lymphedema community?
     
    #86 Winnie53, Jul 31, 2015 at 4:07 PM
    Last edited by a moderator: Jul 31, 2015
  7. Tim55

    Tim55 Type 2 · Well-Known Member

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    Hi - quick update from sunny Spain.

    Currently taking 500mg ALA

    500mg Benfotiamine

    2mg (2000 mcg )methyl cobolamine

    And one multi vitamin daily, together with 4x 500mg metformin.

    Aim was to help with neuropathy in fingers and toes..

    Fingers are much improved, toes not so much.

    I mean that I now have feeling in my feet and toes and I think a slightly improved motor control of my toes (I can hook them round the edge of the pool now, which I couldn't do last year)but the numbness has been replaced by pain. ......

    As a side effect I have noticed my BG levels have had a step change from the mid to high 5s to the high 4s and low 5s..

    The joint pain in my knee however is getting worse. This could be due to holiday footwear and an unfortunate blister on my ankle though so it's on with the program for now.
     
  8. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    @Clivethedrive could you respond to Tim55's post above by sharing your experience with reversing your peripheral neuropathy?
     
  9. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    @Tim55 sorry to hear about the knee. Hope it gets better soon. The improved blood glucose levels, the improvement in your fingers, and the return of feeling in your feet and toes is so encouraging! I really appreciate your posts documenting your progress, both good and bad. :)

    Tomorrow I get my quarterly lab results to learn if and how much progress I've made in the last three months using the LCHF diet, nutritional supplements, and daily walks.

    Peripheral neuropathy continues to be a concern for me.

    It's summer here, and my feet have been swelling off and on, something that has been an intermittent problem for 10 or so years. But I have pain now in the top of my right foot, for the last week or two, and for the first time, I checked for numbness, and the top of both feet are numb though I can feel, I just have less feeling.

    How do the symptoms of peripheral neuropathy progress? Is the progression numbness, to no feeling, to pain? I don't know, and I can't find a description of how the symptoms begin and progress.

    This question is open to anyone who has or has had peripheral neuropathy...many thanks!
     
  10. Tim55

    Tim55 Type 2 · Well-Known Member

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    Hi winnie53

    I had seen Clives comment on pain as the nerves regrow and despite my slightly negative moan yesterday I would rather feel pain than feel nothing, which was the case before.

    As far as progression goes it probably took between 18 months and 2 years before I realised I had a problem.

    First problem was feeling the cold too much and for to long in the uk winter.

    And the progression was so slow I didn't realise I had a problem until I happened to comment to a colleague that I had no feeling in my toes.

    He reacted much more strongly than I expected and told me in no uncertain times I "needed to get that looked at"

    It turns out he himself has been diabetic for years but keeps quiet about it. Had he not been aware of the possible cause I could have just carried on thinking it was just part of getting older.

    It annoys me somewhat that in the uk at least there is a lot of hype about obesity and diabetes but no information about the possible symptoms which would lead to that diagnosis.

    Reading some of your links has been an eye opener in several ways but I am beginning to think type 2 diabetes is not a disease as such, but rather a collection of symptoms which are themselves the result of other problems and the root cause( s) of them could be many and varied.

    In other words my root problem could be a reduced capacity to metabolise vitamin B12, which leads to insulin resistance; which leads to high blood sugar, a tendancy to obesity, potential depression and a greater susceptibility to alzheimers, but all the NHS see is the blood sugar, and despite telling me it is unlikely to be type 2 because I am not obese, immediately prescribe metformin.

    Which suppresses the metabolism of vitamin B12 ...:eek:

    Reminds me a bit about an old song about the gas man. ..

    Carrying On for now though, still away on holiday in Spain,so the heat is an issue for me too.

    Thanks for all your help and advice.
     
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  11. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    Thanks Tim55. :)

    So it sounds like the peripheral neuropathy begins with coldness, then changes to loss of feeling, then changes to pain, in your case within 18 months. That's very helpful.

    And thanks for pointing out that Metformin depletes vitamin B12. It's a good first line drug for type 2 diabetics, but if I were taking it, I'd want my B12 levels checked regularly, and, in my case, because I don't absorb B vitamins well, I'd definitely take a B12 supplement.

    I'm not on the nutritional supplements regimen you're on yet, but I am taking a good quality multi vitamin and mineral supplement and B-complex. The swelling in my feet has lessened a lot. Perhaps the pain in the top of my right foot reflects healing in my case too. Will continue to monitor and make adjustments in my nutritional supplement regimen in addition to my daily walks.

    Got all my lab results back this morning. Not sure what to make of them yet. Some results have improved, others have gone the other direction, and quite dramatically. Will start a new topic and post more on this more tomorrow. For now it's enough to say that my fasting glucose continues to drop and HbA1c is stable. Yay!

    February..... fasting glucose 282 mg/dL (15.7 mmol/L); HbA1c 9.9%
    May............. fasting glucose 136 mg/dL (7.6 mmol/L); HbA1c 5.5%
    August......... fasting glucose 116 mg/dL (6.4 mmol/L); HbA1c 5.4% (Now that I'm under the 125 mg/dL cut off, I now meet all criteria for returning to a pre-diabetic diagnosis).

    Not where I want to be yet, but s-l-o-w-l-y getting there.

    Hope you're having a lovely time in Spain. And do keep posting. :)
     
  12. Rog

    Rog Type 2 · Well-Known Member

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    Just about to hit the 3 months stage since diagnoses and my feet are painful on and off , the thing is my sugars according to the Verio have been good and lost a couple of stone, only one and a half more and I'm a normal weight .
    Some say the foot pain is the nerve ends healing as its early days , I just don't know?
    I have spoken to two doctors and they don't seem that worried but it's still very uncomfortable .
    It's been suggested I take cod liver oil tablets , any thoughts please.
     
  13. Tim55

    Tim55 Type 2 · Well-Known Member

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    Hi winnie53

    I never really had much pain while the condition was developing, more pins and needles and general discomfort.

    The pain has only really stayed recently as I have been taking steps hopefully to reverse it - and I am taking that as a positive sign.

    When I First talked to the doctor and tried to describe the sensations I was feeling he asked "is it like you are wearing socks and gloves all the time?"

    Which was a very good description. As soon as I said yes, he went on to say that stocking and glove syndrome is indicative of peripheral neuropathy.

    Other problems I had included a few falls because my I didn't know what my feet were doing. ....

    RoG - I found my symptoms continued to worsen while I was getting my sugar levels under control, general view appears to be that damage will continue to be caused whenever it gets above 7.8..

    Cod liver oil or perhaps better omega 3 capsules are often recommended for general joint pain but I have never had much success with either.

    Are you on metformin as well to control your levels or just diet alone?
     
  14. Rog

    Rog Type 2 · Well-Known Member

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    Hello Tim , I've got my first after diagnosis HbA1c on the 26th of this month and if the Verio is even in the ball park I don't think I'm anywhere near going over 7.8. I am identifying strongly with the symptoms worsening as my sugars stabilise on the Verio at 5.3 for 90days which is after meal checking to much of the time. On 500mg x2 per day of metformin and dropped from 17.6 stone to 15.4 stone ( which is a weight I havnt seen for years, if it carries on it will be the 80s weight soon lol) hopefully under 15 for the HbA1c. So am I healing up here or getting worse it's very frustrating foot pain.
     
  15. Tim55

    Tim55 Type 2 · Well-Known Member

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    Can't give you a straight answer to that I'm afraid mate.

    Seems to me yours was caught a lot earlier than mine and hopefully the damage is less and the healing has started sooner.

    But acording to at least one article I have read metformin inhibits the uptake of vitamin B12, and B12 deficiency causes neuropathy.

    So you might consider the same sort of supplements I am taking but only you can make that decision.

    Don't know where abouts you are or how easy you find it to get tests done.

    I would be tempted to monitor it for a while and see if it gets better or worse before rushing into anything.
     
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  16. Rog

    Rog Type 2 · Well-Known Member

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    Interesting about the met, hopefully I can get the ok to stop taking it . Definatley like the omega idea , I've heard lipoic acid mentioned .
    Really appreciate your post.
     
  17. This is a great post. Thank you very much.
     
  18. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    I did a brief look around the web this morning for more information on Metformin and B12 deficiency.

    Excerpt from Chris Kresser's e-book, "B12 Deficiency" - (all of his eBooks are free by joining the ChrisKresser.com community, which is also free)...


    Treatment of B12 deficiency


    One of the greatest tragedies of the B12 epidemic is that diagnosis and treatment is


    relatively easy and cheap – especially when compared to treatment of the diseases B12


    deficiency can cause. A B12 test can be performed by any laboratory, and should be


    covered by insurance. If you don’t have insurance, you can order it yourself from a lab


    like DirectLabs.com for $60.


    As always, adequate treatment depends on the underlying mechanism causing the


    problem. People with pernicious anemia or inflammatory gut disorders like Crohn’s


    disease are likely to have impaired absorption for their entire lives, and will likely require


    B12 injections indefinitely. This may also be true for those with severe B12 deficiency


    causing neurological symptoms.


    Some recent studies have suggested that high dose oral or nasal administration may be

    as effective as injections for those with B12 malabsorption problems. However, most B12


    experts still recommend injections for people with pernicious anemia and advanced B12


    deficiency involving neurological symptoms.


    Cyanocobalamin is the most frequently used form of B12 supplementation in the US. But


    recent evidence suggests that hydroxycobalamin (frequently used in Europe) is superior


    to cyanocobalamin, and methylcobalamin may be superior to both – especially for


    neurological disease.


    Japanese studies indicate that methylcobalamin is even more effective in treating the


    neurological sequelae of B12 deficiency, and that it may be better absorbed because it


    bypasses several potential problems in the B12 absorption cycle. On top of that,


    methylcobalamin provides the body with methyl groups that play an role in various


    biological processes important to overall health.


    chriskresser.com !6

    If you suspect you have B12 deficiency, the first step is to get tested. You need an


    accurate baseline to work from. If you are B12 deficient, the next step is to identify the


    mechanism causing the deficiency. This is something you’ll probably need help with from


    a medical practitioner. Once the mechanism is identified, the appropriate form (injection,


    oral, sublingual or nasal) of supplementation, the dose and the length of treatment can


    be selected.


    So, next time you or someone you know is “having a senior moment”, remember: it might


    not be “just aging”. It could be B12 deficiency.


    And here's an interesting study, published in Diabetes Care in 2012 - (it's hard to understand; the tables are what I found most helpful)...

    Association of Biochemical B12 Deficiency With Metformin Therapy and Vitamin B12 Supplements

    http://care.diabetesjournals.org/content/35/2/327.full
     
  19. Paulbaker

    Paulbaker Type 2 · Newbie

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    You don't really need to see a neurologist you need to be sent to the pain clinic. I have been through the NHS pain clinic and unfortunately am one of those diabetics that don't respond to pain treatment. My major problem is the conflicting information I get from my GP - Diabetic nurse - Chiropodist and uncle Tom Cobley and all. I suffer with autonomic, peripheral and gastric neuropothy. GP says it's not unusual, diabetic nurse says it is unusual, in recent foot exam diabetic chiropodist told me that she had never come across anything like it in her life. Spoke to a specialist in California whilst there recently who introduced me to 8 other people who suffered the way I did and told me his colleagues could introduce me to many more. Problem is that the pain pushes up the sugars in your blood and so causes more damage.

    I take tramadol which takes the edge off the pain and suppliment this with paracetamol when things are really bad. Not a cure but it mostly helps. I also take Quinine when I get cramps. Talk to your doctor and insist on something now. Don't be fobbed off by the doctor saying it is the specialists problem now.
     
  20. Hugo the Grasshopper

    Hugo the Grasshopper Type 2 · Member

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    Try Aloe Pura Organic Aloe Vera Gel. You can get it at Tesco Superstores for £3.95 per 100ml tube. Aloe Vera Gel is great for lots of things apparently but I have only used it on my feet. I noticed improvement straightaway. The more liberally you apply it the better it works, I imagine. I rub some into my feet in the morning and at night and the tube lasts me a couple of weeks.
     
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