Did any ones pins n needles on feet n lower legs get worse even after years of b12 injections?
Pins n needles/burning : Did any ones... - Pernicious Anaemi...
Pins n needles/burning
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Scotlad76
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i assume this has happened to you . I think you probably need your B12 injection more often than you are getting it now . . Also , are you taking a daily B9 tablet ( Folic acid )? This is important as those 2vitamkbd work together, You have obviously been left with irreversible symptoms if you still have pins and needles after years of injections -i.e. you got treated too late . Try taking sub lingual B12 lozenges inbetween injections , They seem to help some people ( not me unfortunately, that’s why i’m forced to self-inject B12 )
But first , try to get your injection of B12 more often . Failing that , try sub-linguals , failing that , try self injecting which is easy and cheap . Best wishes .
Twice a week I inject. I dont take folate but I check my levels regularly and they are fine. Neuro did say it was probably permanent and offered ne gabapentin, which I wasn't keen on. However, it feels as if its gotten more intense of late. Maybe I'm just mote aware off it for some reason.
I don’t have pins and needles , but my feet feel like they are burning all the time - only the sensation . They are not hot to the touch . Over the last few days , i thought that it was getting worse so i gave myself an extra injection , which seems to have improved the feet . But did i imagine it ? I also think that stress can have an effect . My feet seem worse when i’m worrying about something . The good thing is the knowledge that one cannot overdose on B12 . So an extra injection every now and then is harmless . I normally inject once a week
I just cannot take Gabapentin -it had a terrible effect on me .
All the best to you , and i hope that your feet will improve .
Aye its a stressful time, maybe that's the reason. I'll go to twice a day see if that helps. Thanks.
Ps yes burning but not hot to touch is closer than pins n needles. And I told neuro I'm not taking gabapentin, I've enough problems without that stuff lol
Deficiency of Panothenic acid a B Vitamin can also cause burning feet symptom. I had it and it does ease if I take a Panothenic acid supplement. I think B vitamins need to be balanced too much of one off sets the others but it is a difficult task .
Thank you for passing on this information . I shall look into it 👍
A good question that I’m beginning to wonder about for myself.
I’ve been injecting twice a week for the last 3 years and feel that keeps symptoms under control, with the exception of tinnitus which has never left me.
However, I noticed in the heat of last summer the uncomfortable burning feeling in the soles of my feet. I seek out cold spots in bed and even use a cold water bottle when it’s warm. I think the palms of my hands have it to a lesser extent too. Both hands and feet have become worse since last year.
So I’m not sure why this has happened a couple of years after finding an injection regime that otherwise works for me.
The only other thing is that blood tests always show high MCV despite my B12 regime. My folate levels are fine although I feel I’m not far off having an under active thyroid.
My tsh has been rising for years too ( 7.85 at last test) with high tpo and tgab.. it could be to do with that and not PA..
Might be worth putting any thyroid results on Thyroid UK forum on HU.
Are you being treated for thyroid issues?
Link to Thyroid UK website
I have they just tell me to tell my gp they are wrong or to change gp's.. I understand what my readings mean and need to await funding to go private.
Meanwhile my gp has referred me to rheumatology querying Fibromalgia lol
Look into Panothenic Acid for burning feet, it can be a sign of deficiency, it is a B vitamin.
Yes. The pins and needles in my feet have been getting steadily worse over the last 5 years. They started after my PA diagnosis and got worse despite injecting twice a week.
That's because my neuropathy isn't caused by a B12 deficiency.
And it's possible yours may not be, either. It's important that you do not assume that it is and ignore other possibilities.
You need to see a neurologist to find out what's causing your neuropathy and what might be done to treat it, or to alleviate symptoms.
The neurologist I saw decided that my neuropathy wasn't caused by a lack of B12, or by diabetes. But he was good enough to admit that he didn't know what the cause was, and to refer me to an expert in London.
After a barrage of tests he also decided he didn't know the cause. But he did know what I had - Idiopathic Axonal Neuropathy. Nobody knows what causes it, just that it is more common among very tall men in their sixties. I am 195 cm and was, at that time, 59 years old.
He described how it was likely to progress, told me to come back in six months time and we would see if he was right. I went back nine months later and everything he'd predicted was right. The progression had all but stopped. I was told I'd slowly get worse as I got older, but not to any great degree.
Gabapentin has been my life saver. I started on 300 mg three times a day and stuck with that for four years. But the evil gremlin with the red hot needles would still jab them into my toes at night. So I started taking 600 mg in the evening.
A few weeks ago I also started amitriptyline, just 20 mg in the evening. That has reduced the permanent tingling and 'walking on pebbles' feeling in my feet.
So -
Ask for a referral to a neurologist. Explain that your neuropathy is getting worse despite regular B12 injections. They may decide you need more frequent injections. They may decide it's caused by something else. They'll definitely be able to recommend what drugs might alleviate the symptoms.
I wish I had a gp as understanding as yours. I will bring it up next appointment. Thanks.
Hi thereI found your post very interesting. I'm a speed reader and recently retired i.e. bored. I decided to look into Idiopathic Axonal Neuropathy. Did your neurologist explain why he came to the decision it was Idiopathic Axonal Neuropathy and not B12D? All the symptoms look the same to me.
The main reason is that it started after I'd started injecting twice a week. The other reason is that a neuropathy caused by B12d doesn't result in the same findings on nerve conduction studies. I have no Sensory Nerve Action Potential (SNAP). But the motor nerves seem unaffected.
Good morning fbirder,
Interesting description of your neurological condition since both your symptoms and experiences with neurologists substantially mirrors my own, the main difference being that my little gremlin/symptoms are fortunately infrequent at night and have been described by me as like having a dentist's metal toothpick drawn strongly across the sole of my feet - mostly the right one but occassionaly the left one. Not fun at night but I have found that getting up and making a cup of tea with a capful of whisky in it invariably resolves the issue! I came across this as a good remedy for middle of the night leg muscle cramps.
Probably the most interesting remedy I've seen so far. Although, in fairness as a Scot the mention of whisky triggers my bias lol
Hmmm, I am more of a gin person, but I do like a nice whisky, so I'll bear that in mind.
Time for another Colorado anecdotal response. I don’t know about “pins and needles” unless you’re going back to The Searchers. My doctor does describe my foot and toe tingling as peripheral neuropathy. Very uncomfortable as well as distressing. The relief for me has come through Nitric Oxide.
I found out about NO through Patrick McKeown and his Oxygen Advantage presentations. He will teach you the how and explain the why.
NO is a vasodilator as well as a healing molecule to the endothelium providing better blood flow. This healing also allows more NO to pass along to the troubled areas, a double bonus. Our body naturally produces NO but as we age the levels fall dramatically. The need to increase blood flow and the carrying of oxygen to our cells is effected by NO content in our system.
Dr. Van Dyken explains how diet effects our body’s production of NO and in a second video shows how breathing techniques, more deeply explained by Patrick McKeown, can increase our body’s production of NO exponentially.
My toe’s response to the breathing exercises was dramatic and almost immediate. I preformed the Light Slow Deep breathing in and out through the nose augmented with the humming for a hour casually while watching the TV, easy enough. I did experience some light headaches the first couple of times probably due to the increased oxygen going to my brain; maybe it increased my brain function too much. I am certain I now have a clearer brain as a bonus. The numbness in my toes has gone away but requires supplementation humming every now and then. Contrary to Dr Van Dyken’s advice I hum while driving, it goes well with Mozart. I have found 500 mg daily of L-Arginine extends the time before needing to hum. My primary care doctor found this all “very interesting”.
All this costs is a little time and effort. If it works for you like it works for me your investment will seem trivial and your life will be the better for it.
Patrick McKeown
youtube.com/watch?v=AiwrtgW... some what long, nuts and bolts at 17th and 35th minutes, Oxygen Advantage has youtube covered with benefits all around for everyone
Dr Van Dyken
youtube.com/watch?v=bis1gvj... dietary info and NO explained
youtube.com/watch?v=6v-nTRL... humming increases NO production
Please note that Nitric Oxide (NO) also inactivates all of your Vit B12 in the blood!
NO is a physiological signalling chemical. It does not inactivate B12.
en.wikipedia.org/wiki/Nitri...
You're thinking of nitrous oxide (N2O), the anaesthetic gas.
en.wikipedia.org/wiki/Nitro...
Of course you are absolutely right. I can't believe that I made that mistake, being a retired chemist. Apologies.....
If your peripheral neuropathy is caused by B12 deficiency I can only think that NO will exacerbate it!
NO inactivates B12 so even those who didn’t have a deficiency can run into B12d problems with NO use/abuse.
Please check Martin_12’s response to the same input as yours by Achesandpains75. I have no chemist or medical credentials. In the sources I did provide there was no mention of NO interacting with B-12. I think Martin_12’s assessment of confusion is spot on. I have never abused N2O and only occasionally used it in the dentist’s chair.
Whole food plant based diets cause b12 deficiency.
My suggestion was to increase Nitric Oxide production by your body as that has helped reduce my peripheral neuropathy symptoms. I don’t know if what you describe as “pins and needles” is the same thing. The sources I provided show the positives of increasing bodily NO production as well as vegetable sources with ingredients that will aid the bodies NO production.
Vegetables do not cause B12 deficiency. A vegetarian/vegan diet does not provide adequate B12 and usually requires supplements. You are supplementing your diet with B12 injections. I can not find any information indicating a vegetarian/vegan diet will diminish your B12 injections following a search of ‘plant based diets cause b12 deficiency’. I also searched with “cause” being required.
You might find this US National Institutes of Health study of value. “In this review, we will discuss the status of vitamin B12 among vegetarians, the diagnostic markers for the detection of cobalamin deficiency and appropriate sources for sufficient intake, through the description of the features and functions of vitamin B12 and its absorption mechanism.” My underline. ncbi.nlm.nih.gov/pmc/articl...
I veiw plant based vegan diets as dangerous for various reasons including the extreme risk to children. I dont mean o be confrontational or rude though sorry I thats how I came across.
Thank you for your reply. I was trying to promote Light Slow Deep breathing with humming as a possible way to alleviate neuropathy symptoms. I included Dr Van Dyken‘s listing of vegetables not as a promotion of veganism, though she does, but as a source of nitrate rich foods. I think she explains the value of increasing Nitric Oxide production in the body clearly. LSD breathing with humming does not require a vegan/vegetarian diet. I am neither vegan or vegetarian but follow to some degree the Wheatbelly lifestyle diet which promotes both animal and vegetable fat as an energy source for the body. Perhaps my response was a little edgy after receiving comments that confused Nitric Oxide (NO) with Nitrous Oxide (N2O) and even an off hand accusation of my abusing N2O, a controlled substance in the US. Trying to regain some of your body’s natural production of Nitric Oxide can help you in more ways than alleviating neuropathy symptoms, if it even does that. LSD breathing with humming only costs you a little time and effort. It could happen.
I notice burning and pins and needles and numbness when I need a b12 injection and I have to take a shot at least every 3 weeks or I can't sleep for the burning prickling pains. I have found Panothenic acid another B vitamin helps me when I have burning feet too. Read up on it.
When people post about the feeling of burning, especially of feet, I quite often post this link.
It is getting on a bit but nonetheless it does give an overview of the causes of burning feet. And I have not seen a more recent article which I could use instead.
Burning feet syndrome
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