I'm around 6 months into treatment allot of the pain has gone away. I'm feeling much better then I was, but still have some issues.
Depression and slight insomnia, which makes me hate life at the moment.
The tingling, it isn't painful, just annoying. Do I still have a chance of getting rid of the wacky nerve signals going to my arms and legs, with numbness here and there and itching?
So far I exercise 5 times a week, cardio two hours three times a week and core two times. I can do allot more than I used to three years before, but the tingling is still bothering me.
It's in my feet, legs, fingers, hands, arms under mainly. My face, and in my back sometimes. I'm making progress slowly with my health and physically I'm stronger then I have been in years, just mentally I'm really off. Taking seroquel and currently tapering the Valium, which makes me go into withdrawal and turns my body and mind out of whack, so think that keeps the depression and mental state not good at the moment.
Anyway back to main topic for the people that healed their neuropathy. How long did it take and what did you do to heal/improve it?
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Geckowacko
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Are you taking anything for it? You may find that pregabalin might reduce the symptoms and I’ve found alpha Lipoic acid (available from Amazon) helps with the night twitching.
But ask your neurologist first about the ALA.
Seroquel and pregabalin should be fine together as a friend takes the two.
My GP won't refer me to a neurologist he "thinks it's all in my head". I'm at the stage that I can't deal with doctor's anymore, I've been going to them ten years, I took GABApentin, gave me really bad migraines, eased the pain though in my limbs, but my head was pounding.
At this stage I think I can deal without medicine, it's annoying, but not debilitating.
I know for myself it's b12 deffeincy caused by some inability to absorb it properly auto immune. Pain I had for years disappeared since B12 treatment and I diagnosed it by myself. Cause of these damn doctor's I thought I had fibromyalgia, which was total BS in my case.
So for the love of God, doctor's can F off in my opinion. They only did more damage than good. I'd like to avoid Pharma as much as possible and heal naturally.
I'll keep it in mind if it gets worse pregabalin, haven't checked that out. I can get it from Thailand pharmacies delivered here without a doctor's say and prescription so might try, if it gets worse. For now it's very manageable without medicine, thankfully.Thanks for the info.
Hello fbirder, I noticed You mentioned 'night twitching'. Sometimes when I get restless legs ot progresses to my torso and then I twitch a lot, weird spasms That I can't control. Does That Sound like what happens to You?
When watching TV in the evenings my lower legs will start jerking as if I’d got an electric shock in my feet. That oils carry on until I fell asleep (obviously not easy). Cocodamol would help me sleep but the alpha lipoid acid has reduced the frequency and severity quite substantially. Very rarely it would happen to my hands, but never anywhere else.
by the time I managed to start treatment my feet were completely numb . Then I felt so much better after the first injections but founf myself deteriorating having to wait 3 months for the next one . But my GP insisted that my numb feet were “idiopathic “ Would not give an injection before 3months . So that’s when I started to self-inject . 3 years on my feet are no longer numb, but burn like hell . I can expect no more improvement now . I can live with burning feet ..
I never went fully numb really the feet issues where in a short time span. Just immense pain, like being on fire from the inside and stabbing pains. Now it's just tingle tingle tingle tingle and minor pains. They said going from pain to tingling is a good thing and that's the way nerves heal. My dad had nerve pain in his legs and it took two years to vanish, after treatment. Wasn't B12 deffeincy though.
My neuropathy is also idiopathic. But I think they're correct.
The timing was the giveaway. When I was first diagnosed my GP tested my feet and there was a tiny bit on numbness on one big toe. After months of treatment it slowly started getting worse - until I had to see a neurologist. He was a bit stumped - so he sent me to a specialist in London. He ran a load of tests and said my neuropathy was associated with being tall. He described how it would progress. His prediction was spot on.
So I'm never going to improve, but degrade very slowly. But that's better than some of the other possibilities.
Pffff, caused by being tall. How tall are you? 7/8 feet? I'm 6.2 and 30 years now, symptoms of pain started mainly at 21... Well my back pain at 16, which has vanished since injecting... So maybe longer.. Anyway, I think the reason that you're tall is a load of sandwich. Being tall don't cause nerve damage, except if nerves are blocked and you have some kind of giant growth going on. When doctor's don't know they just give you some information, it's so hard for them to just say "we don't know what's wrong with you". They rather slap some diagnosis on your butt and let you go.
I'm very sceptical about the tall thing, I don't buy it all.
I do have mild tingling & numbness in my toes due to chemo therapy damage that I was told was now permanent by my oncologist ....but thats improved massively since bring on b12 injections. I do inject myself to the guidelines that states every other day when theres neurological problems.....mine are tremors & memory issues! Tremors have improved greatly too. My neurologist was impressed & wants to research B12.... Am a little dumbfounded as I thought tremors were a symptom of b12 deficiency.....????
By the way I was also told my trenors were just one of those things they dont treat by my GP.....as they have other patients like it!!! Words fail me.....just whenever I hear the words idiopathic or words to that effect it sets my alarm off & me on a trail to investigate....
Mine is not to reason why.....just so long as the great medics in the sky -after their in depth cogitations come to the great concludion that we simply need injections more frequently than two monthly!! That would be handy!!!!
Yes, you’re correct. The Clinical Lead in Neuroimmunology and Honorary Senior Lecturer at the National Hospital for Neurology and Neurosurgery is wrong and you’re right.
Idiopathic neuropathy is like saying you have fibromyalgia. It means you have pain or a nerve disorder, but we don't know actually where it's coming from. They can't pinpoint a direct bio mechanical link, so they call it idiopathic. That's why idiopathic is about 40% of all cases, they just don't know. Yet, B12 a vitamin eases and has effect, a true bio mechanical link. Ummmm, if it all comes from the mind, why b12 effective???
If B12 fixed it then the neurologist wouldn't have said it was idiopathic. But it got worse after treatment started, not better, and it hasn't improved in the slightest after three years of B12 injections. That's why he didn't say it was caused by a B12 deficiency.
The evidence is out there. Tall people are more likely to have sensate peripheral neuropathy. He sees cases of tall men in their late 50s with sensate peripheral neuropathy with no obvious cause quite often.
Hi Geckowacko. I've been injecting B12 every other day for nineteen months now, but change to every day when I notice tingling in fingers and toes, negative thoughts etc, return at night after overdoing anything .......
It does seem fairly usual for those with PA/B12def. to find their symptoms return after exercise or undergoing extra stress - I believe Dr Chandy warned of this on his B12def.org. website.
Research also suggests that those who regularly exercise intensively have higher B12 and folate requirements and can be functionally deficient in B12 even with normal or high B12 levels:
ncbi.nlm.nih.gov/pubmed/162...
There are very interesting references and research links to athleticism/exercise/neurological illness in the book, " Vitamin B12 Deficiency and Chronic Illness', and, apparently, MND (ALS or Lou Gehrig's Disease in the US - named after a well known athlete), is now treated with very high doses of B12.
I find walking in nature good for the spirit and a gentle way of keeping BP down and heart healthy.
Hey, Polaris. I do find if I have stress the tingling increases and also with fatigue. Today I just feel wiped and I have a big move to do, so I just pushed through it all. Feel like the fog in my head and headache plus fatigue just drained me. I have some good days, but days like these are driving me nuts. I hope I can still get better, I try to do my best, but can be challenging just to survive the day to day activities.
I hope my children will be spared from autoimmune disease, I think I have three at the moment, I also believe it will be my undoing auto immune diseases. Just hope I don't inherent it to my kids though.
Oh gosh - moving is so stressful nowadays - so go easy on yourself and accept any help that may be offered from friends and relatives. Moving house is what exacerbated my symptoms nearly three years ago.
I have three Autoimmune diseases too, but psoriasis in my hairline has almost gone now and hair itself has thickened up amazingly well so don't despair. Gluten free for about two years may have helped?
Hopefully, there'll eventually be more answers for our children.
Absolutely. I find when I have busy days Im really tired the next day & my tremors are worse.
I too noticed my tremors were worse on the day I didnt inject B12 so For a month I injected every day but then started getting bowel issues so have dropped it back to alternate days, bowels are fine but tremors slightly worse on non injection days. Am intrigued as to why that happens as I must have plenty of b12 in my system? Putting the injections back to daily improved the tremors but then my bowels start to play up again! Weird!!
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