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Help in dealing with neuropathy

It is very common for doctors to overlook B12 deficiency-caused neuropathy in the belief that it is due to diabetes. This is both a common complication of oral antihypoglycaemics and often part of an autoimmune syndrome involving pernicious anaemia. (The other diseases in this syndrome, apart from diabetes, include Hashimoto's and Lupus, although not everyone has all of them.) There are inheritance factors as well. The condition of pernicious anaemia or other Vitamin B 12 deficiency is easy to treat but if untreated will cripple, dement and kill, mistaken for alzheimers, multiple sclerosis etc. Treatment for the neuropathy and other neurological symptoms requires injections of hydroxycobalamin (or sometimes another injectable form of cobalamin) every second day for two weeks to six months, then usually monthly injections for life, unless oral absorption can somehow be restored. In which case one could theoretically supplement with oral methyl B but the oral hypoglycaemics would probably inhibit absorption. (Note that intestinal surgery, nitrous oxide (laughing gas) and vegan/vegetarian diets are also high risks.) In Australia hyrdoxycobalamin for injections is prescription free and many people self-treat due to the general lack of flexibility and real knowledge on this in the medical communitiy. In Britain patients get very short shrift. Vitamin B12 is the most complex vitamin. Vitamins are not just add-ons; they are required for life. People wanting to know more about this complication/co-factor in auto-immune diseases might consult this article, which contains a film and multiple links: https://candobetter.net/node/4463

 
Emmotha said:
This is the best and most hopeful reply I have read about neurothapy. Thank you!
My blood has just gone up to 12 and it's here with a vengeance. Time to take it seriously now. And your post gives me hope that it can calm down.
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Hi, I just posted about B12 too, not having seen your excellent report on German therapy. You might post a comment to the article I mentioned. I do however think that people will benefit from the films and links in it at https://candobetter.net/node/4463
 
@SheiliaN Thank you so much for posting this information. I watched the documentary, read your article, then watched the movie trailer. I'm still reading...

I knew about B12 deficiency, but didn't fully grasp how devastating it is when undiagnosed and untreated for too long, leading to disability, which may not be reversible, and death. I'd like to show this film at an upcoming diabetes meeting. Do you know how I can purchase it? I live in the USA.
 
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I was interested in your comment about using Aloe Vera Gel. I suffer from restless leg syndrome and recently have been getting severe leg cramps at night. The coolness of the Aloe Vera seems to help this. I would also mention that I have been reading these posts because I think I have the beginning of neuropathy. At my last diabetic nurse appointment at the gp's surgery she told me to mention it at my next hospital appointment. this I did, and his reply was that because I didn't have pain in my right big toe as well as my left big toe, it was unlikely to be neuropathy. I do now have a degree of discomfort in the right toe too. has anyone any thoughts on what I should do next? My blood glucose levels tend to be very erratic and can go quite high, especially if I forget to take insulin before my evening meal but take it later on.
 

Hi Tim55... I have been reading all the posts with huge interest... I think I must have had D2 for ages before blood tests showed it up - I have numb patches on my toes, but no pain... my great-grandmother had pernicious anaemia, among other things, and I seem to have inherited a lot of the family disorders, ulcerative colitis, hypothyroidism and Gilberts Syndrome to name but a few!... I would like to try some supplements as my son's brother-in-law is a Diabetes surgeon and he said my numbness may have been due to B12 deficiency, not the D2... Where do you get your supplements from, would you mind me asking? How do you know you can trust the supplier? I have read such a lot of bad stuff about online suppliers... I hope you have enjoyed Spain, in spite of the heat.... Susi
 
I have had B12 injections from my doctor. I think if I was going to have oral B12 I would try to get it from my doctor or a company that uses the same level of manufacturing standards as drug companies have to.

There is also a website that apparently has info on whether certain supplements are reliable as to their ingredients, but I can't remember it's name. A couple of members here have mentioned it. It has a small annual subscription I think.
 

Good morning CatLady... very sensible advice... I am in and out of the country as our company works abroad, so it's very difficult for me to have a schedule for anything, let alone a series of injections... supplements it is then... I guess Boots does them? I don't mind how much they cost, your health is paramount, but it's sourcing them that will be the problem... I will research it properly and look for the site you mention - it sounds ideal... thank you for that...
 
I remembered the name of the website:
https://www.consumerlab.com/
 
Hi Susi

Spain was great thanks.

I have to admit I use one firm for most of my supplements and have done for some time, never had a problem and they claim to be UK based quality suppliers, but then, to misquote Mandy Rees Davies, "they would say that wouldn't they?""

They don't list benfotiamine though, so I had to go elsewhere for that.

I'll need to look for the links - I'll pm you with them later.

Cheers

Tim
 
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Thank you Tim... Glad you enjoyed Spain...
 

Hi JudiP. The best natural remedy I know for leg cramps is Magnesium. You can take tablets (100 mg a day may be enough and they are inexpensive) or you can also get it into your system if you buy Magnesium Flakes for putting in your bath water. The Magnesium Flakes are a delight when dissolved in your bath and should stop your cramps. I get these from Tesco Superstore for about £3.75. The only other thing I have found useful is having the head end of the bed higher than my feet so blood circulation flows downward through my legs in bed. Just 4 inches difference is enough. I don't get cramps or pain in my feet nowadays.
 

@JudiP I agree with all of Hugo's suggestions, the cramping is likely due to magnesium deficiency. 100 mg magnesium may work, but if it doesn't, it's best taken throughout the day. I personally have to take 150 mg magnesium citrate two to three times a day at meals to eliminate muscle cramping. Three times a day worked best the first couple of months.

I meant to respond to your post earlier. Neuropathy is reversible if you act early enough by getting blood glucose levels down, by walking or exercising daily, and by taking specific nutrients in high enough amounts. Read this entire thread for more information on supplementation.

For better blood glucose control, whether you're a type 1 or type 2, on insulin or off, excellent guidance can be found in the book, Dr. Bernstein's Diabetes Solution, 4th edition. http://www.amazon.co.uk/Dr-Bernstei...=1440968832&sr=8-1&keywords=richard+bernstein

Please, ask questions, and keep asking questions. Don't ignore neuropathy. It's possible to stop it's progression. It may be possible to reverse it too, but again, you've got to act now, and there is NO medication that stops neuropathy's progression. Only diet to reduce and maintain lower blood glucose levels, specific nutritional supplements in high enough doses, and exercise work. Rooting for you.
 
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Bumping up this thread to respond to all the new neuropathy inquiries.

Lots of good information in this thread. Worth the time to read.

I personally have reduced feet and ankle swelling with 500 mg/day vitamin B5. Pain in top of right foot goes away, then reappears when my blood glucose levels begin creeping back up, likely due to stress and my current work load. I should add that I've been taking a high quality B-complex for six months prior to taking the vitamin B5 that is made with dehydrated, organic, whole foods. Tight blood glucose control is foundational, but the nutrients, particularly the B vitamins and alpha lipoic acid are needed too.

Other B vitamins are used to treat neuropathy too, also alpha lipoic acid. Read the thread. Write down the nutrients used, forms of each nutrients used, then research each all and decide which one to try first. Watch the video on B12. Consider getting your B12 level checked. Long term deficiencies in B12 lead to a variety of serious illnesses. Wish I had more time to research this again, restate what we learned from members through this thread, but just don't have the time right now. Apologies...

At minimum, read what @Tim55 posted on this thread. He posted some very encouraging results on this thread with two B vitamins, he also listed the specific forms he took. Look at his more recent posts on this thread.
 
Hi Paulbaker... did you read the pervious posts re supplements for neuropathy? It might help you.... they are clever, informed people with stories to tell... Susi...
 
A friend who was recently diagnosed with diabetes and has feet problems was told by his doctor that neuropathy doesn't develop till many years after a diabetic diagnosis.

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bobrobert said:
A friend who was recently diagnosed with diabetes and has feet problems was told by his doctor that neuropathy doesn't develop till many years after a diabetic diagnosis.

????????
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It's often a deficiency of B12 that causes the problem, rather than the diabetes... If you read back in this thread there is lots of good advice and information about neuropathy...
 
bobrobert said:
A friend who was recently diagnosed with diabetes and has feet problems was told by his doctor that neuropathy doesn't develop till many years after a diabetic diagnosis.

????????
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Hi Bob

I think its probably true that neuropathy only develops after you have been diabetic for some time, but if your friend had no reason to suspect he was diabetic ( as I hadn't) until the symptoms began to appear, then it is entirely possible to develop neuropathy before diagnosis.

I think the doctor used a poor choice of wording, TBH
 
Morning Folks

A brief update for you.

Back in July I started taking Alpha Lipoic Acid (ALA), benfotiamin and methyl cobolamine in an attempt to help my neuropathy.

I have previously reported encouraging results and I would now like to add to them.

I noticed a gradual improvement in feeling in my hands, but developed pain in my feet which was not pleasant but I take it as positive sign that the nerve damage is being repaired - albeit slowly. What I also noticed was a step reduction in my FBG levels.

I stopped taking ALA around the end of August - I had run out, cash was a bit tight and I had stocks of Glucosamine and omega 3 I had tried previously, so I replaced the ALA with them.

However, I began to realise that my FBG levels were rising again and I was feeling no further improvement in my feet, and my knee was getting worse. This was all very gradual and it was only when I started to really look back at the figures and in particular when I graphed a rolling 16 day average that I saw the full effect.

At the point I stopped the ALA I had 195 relevant data points, of which:

- 21 (10.8%) were between 6.0 and 6.9,

- 145 (74.4%) were 5 point something

-26 (13.3%) were in the 4s

And my 16 day rolling average was around 5.3

After several weeks without the ALA the analysis became slightly different -

I now had 246 data points, of which:

-29 (11.8%) were in the 6s

-188 (76.4%) were 5s

- 26 (10.6%) were below 5

And my rolling 16 day average was nearer 5.7

I restarted ALA instead of the Glucosamine and omega 3 on 7/10/15 and as of this morning I have 284 data points, of which:

- 30 (10.6%) are in the 6s

-214 (75.4%) are 5s

-37 (13.0%) are below 5

And my 16 day rolling average has dropped to 5.1

For those of you with a mathematical bias I should add I have 3 results above 7 - which were there from the start and I ignored, so the total %age figures will not quite add up to 100.

I also had an annual review just over a week ago and my HbA1c was down to 34 (5.3), my cholesterol is 3.4 total, of which 50% is the good stuff, my vitamin B12 levels were normal and I survived the foot examination with no problems.

Because I believe Metformin can inhibit the absorbtion of vitamin B12 I discussed with both the DN and my GP the possibility of reducing my dose from 4 x 500 daily to 3, or even 2, which both were happy with.

I am currently taking 3 and continuing to monitor my levels, but I think it is fairly clear to me at least that this regime is having beneficial effects and ,maybe addressing a more fundamental problem.

HTH

Tim
 
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