Now totally confused.........

[Twitchen]

Trying to find a supplement to help idiopathic neuropathy in my feet - burning, tingling, pain, which is getting worse.

Had just about decided to try starflower oil and then again came across information about alpha lipoic acid (which I have asked about before on here but was worried about taking it being hypothyroid).

The ALA really does sound like it helps many people with neuropathy and I would like to give it a try but I am not sure what dose to start on. I read about someone who takes one 600mg tablet per day and says the results are incredible, but wonder if it would be better to start on a lower dose.

Has anyone tried this supplement and, if so, did it help at all? Getting quite desperate about how the neuropathy is spreading and neurologist hasn't a clue what is causing it

[greygoose]

Have you been tested for B12? That's a very common cause of neuropathy. Or, it could just be that you're under-medicated for thyroid.

[Twitchen in reply to greygoose]

No definitely not a problem with B12. Have been supplementing that with sublingual methylcobalamin for the past couple of years. Even got told my B12 level was too high!

[humanbean in reply to Twitchen]

Is your folate level good too? Your body can't make use of B12 without good levels of folate.

[Twitchen in reply to humanbean]

Last serum folate reading was 10.8 - about two years ago. Have recently had more blood tests, haven't seen the actual numbers but GP says everything is normal.

[silverfox7 in reply to Twitchen]

The range for B12 is very low do it might not be as high as your doctor is suggesting. I've heard 900 is a good figure to aim for.

[SlowDragon Administrator]

Have you read this article about the possible link between low vitamin D and low B5.

Have you had your vitamin D level checked? Or have you tried taking vitamin B complex (as seemed to be suggested in answers to some of your previous posts)

drgominak.com/vitamin-d-hor...

[Twitchen in reply to SlowDragon]

Interesting, I was thinking about getting a vitamin D supplement after it was recommended on the news a while ago. I see that they suggest taking 10mg per day, so probably that would be worth a try.

[SlowDragon Administrator in reply to Twitchen]

You need to test vitamin D level first, before supplementing and re-check level at least twice a year while supplementing.

If GP won't test, you can do test at home via postal NHS service - £28

vitamindtest.org.uk

[Twitchen in reply to SlowDragon]

Thanks for the information. I was going to get the 10mcg vitamin D supplement for both myself and OH, as it is the lowest dose and what the NHS recommended. We would only take it through the winter, which again is what they recommend.

[MariLiz]

I would agree with greygoose it could be low B12. I had a lot of burning sensations on my feet, arms and legs when my B12 was low. They disappeared once my levels increased.

[humanbean]

Another B vitamin that can cause neuropathy is vitamin B6. This is more problematic than some other B vitamins. Both excessive or deficient levels of vitamin B6 can cause neuropathy.

en.wikipedia.org/wiki/Vitam...

lpi.oregonstate.edu/mic/vit...

[humanbean in reply to humanbean]

Another thought - are you taking a B Complex with your B12. If yes, what brand and dose is it?

[Twitchen in reply to humanbean]

No definitely not, just the B12 and now only a couple of times a week as my level got so high. I have also just gone back to taking 2ml of Mega Mag ionic magnesium every day.

[humanbean in reply to Twitchen]

Taking a B Complex is actually a good idea. Having lots of one of the B vitamins and low levels or deficiencies of the rest is not recommended.

Taking a B Complex which includes an extremely high dose of vitamin B6 wouldn't be my first choice. But I wouldn't want it missed out altogether.

[Fredddy]

vitamin b6 CAUSES peripheral neuropathy - and when you see those "stress dose" at 3333 % of normal in the store - RUN LIKE HELL - because they can cause it - it's very well documented. so much for supplements. the big question is why does a neurologist not know what to do next? You can try an extremely low glycemic diet - cutting out bread - cheese - alcohol - everything but fish and lentils - because you could be Pre-diabetic 0 definitely test your HB1Ac blood sugar average for past 3 months. Apart from exposure to toxins like a flaking lead painted room - there are also genetic tests that can be done. I was told I might have "Atypical" CIDP = chronic inflamatory demyelinating polyneuropathy - once you are demyelinating - and lose your myelin - your axons will cause you chronic pain for a long long time and you will hate it - so you Might want to try a treatment dose of High Dose Corticosteroids - which is Hell and hard to recommend - but if you are in the demyelinating process - it could stop it and save you some pain down the line. It's worrisome that you say that it is getting worse. Maybe it is just getting worse on days when you are not protecting your feet - from the cold at night - and hands - and they are exposed to things that can cause them pain. It's winter - think gloves, extra socks - even at night - avoiding banging them - Gabapentine has only marginally helped - same as ALA - and I take lots of ani-oxidants for my iver - Bulgaris, Milkthistle, D, C, Curcumin, Ginger, All sorts of stuff - And after 15 years my pain level in my feet HAS started to decline - I still have to take opioids oxycodone - the only thing that relieves the pain and I can tolerate for years - I am cutting down on it slowly- though having a herniated disc - it comes in handy. Have you tried occasional 10 mg of prednisone? These are the things I know you want to avoid if you want to find success with supplements - there is a site on facebook where a guy proposed a formula - he is generally a narrow minded bully - and all the ingredients are supplements which are available except 1 which runs about 100 euros a month... so it's not cheap - but people seem to get some help. ps I don't think I have atypical cidp - I think the neurogist needed an excuse for a biopsy sample - I think i have got it from trauma to the spine from a fall at a time when I was low on unreplaced pituitary anterior hormones with a low auto-immune response - but that is beyond the neurologists. good luck.

[Twitchen in reply to Fredddy]

Many thanks for your detailed reply. Sorry to hear that you have had such a long difficult and painful journey in finding something that helps.

I think it is worth me trying the ALA starting with a small dose of 200 mcg per day, just to see if it helps, as it certainly does seem to benefit some people. You are quite right in that I have noticed it has been markedly worse this winter than it was in summer, so perhaps cold triggers a decline. I am generally quite wary about taking supplements and think that too many people throw mega doses of them down their throats thinking they are doing themselves some good, but of course too much of anything can be harmful. I'll stick to my Mega Mag, B12 a couple of times a week and give the ALA a trial.

Neurologist told me that in a very large number of cases of neuropathy a cause is never determined, so I suppose at least he was being honest.

[Polly91 in reply to Fredddy]

Hello Fredddy

Your post is v interesting albeit a bit worrying. How are you now!

I am beginning to think I may have CIDP as nothing else fits & the numbness & tingling has got worse over last 2 months (started in left wrist 3 months ago) but now hands , arms , feet & lower legs. It’s a bit on & off. But almost always there in hands. Neurologist thought carpal tunnel or autoimmune but said wait another 4 weeks.

I’m on naproxen.

I don’t want to wait in case there is demyelination going on as that will be irreversible. The worry & stress doesn’t help.

Did you find if you kept activity down your symptoms are less?

Thank you.