When my monthly B12 injections were cut to every 3 months I developed a range of symptoms including peripheral neuropathy. I am still trying to get this situation resolved (my GP insists I will need to be seen by a neurologist which could take months so I may need to try self-injecting) but in the meantime I have a question about neuropathy. My neuropathy, consisting mainly of numbness with some tingling, began in just fingertips and toes but has gradually progressed until it can be right up to my knees, however it’s not always the same; some days it’s much worse than others, and it also seems to be made worse by vigorous exercise. Does anyone know if this sounds like B12 deficiency, or would you expect neuropathy caused by B12 to be more consistently the same?
Thanks
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Brocher
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I would push to getting least 2 monthly injections write to your gp stating bnf guidelines Also that while you are waiting to see a neurologist you do not want to get worses
State you got worse when Injections stopped.
State symptoms
Every other day injections might be necessary as per guidelines
The very fact it got worse woujd indicated it is because of b12 deficiency .
Thanks very much for the reply. I’ve tried hard to convince my GP to treat while waiting but I can’t convince her that it’s possible to have deficiency symptoms if serum B12 levels are not low. She insists she’s not allowed to give more B12 without the say so of the haematologist and the haematologist says refer it to a neurologist! It seems none of them are willing to just read the literature on B12 deficiency. So frustrating!
Your doctor is talking rubbish. SHe does not have to get permission from anybody else. She is buck-passing.
As she has referred you to a neurologist she must think you have neurological symptoms. In which case you should be treated, according to the BNF with injections every 8 weeks.
I would write a letter. I would include, with the letter a copy of this - onlinelibrary.wiley.com/doi... - with Key Recommendation 4 highlighted. The one that says...
In the presence of discordance between the test result and
strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment
Your letter should address the key points:
1. I have been receiving B12 injections, every month for X years. This was dropped to every three months, for no good reason X months ago.
2. Since then I have developed a peripheral neuropathy consistent with a B12 deficiency. The British National Formulary says that people with a neurological symptoms should receive injections every 8 weeks.
3. The British Committee on Standards in Haematology say (see enclosed paper) that, when obvious symptoms, like mine, are at odds with blood tests, treatment should not be postponed.
4. You have told me that you require permission from a haematologist or a neurologist before you can give be the treatment all the experts recommend.
5. I want my injections to be given every 8 weeks, or more frequently, to avoid any neurological damage becoming worse.
Thank you for all the info. I will try again to push my doctor on this. Thanks for taking the time.
That’s a good question Brocher and one I’d love answers to also as I’m experiencing pretty much the same and I’ve been injecting every other day for around 7/8 months now,it’s as you say one day I can feel pretty much minimal signs and others I’m on fire from my feet right up to my knees ,my toes on the tips feel numb and I get pins and needles in my fingers ,sometimes I’m unable to use my right index finger because of the pain,I also get that same fire radiating up my spine to my shoulders but sometimes I go weeks between episodes of that sensation.I’m in the process of speaking to a new gp about referral to a neuro but at the same time I have my private consultant working in the background chatting to his neuro colleague on wether it’s advisable for me to have the mri scan on my spine that I’ve requested to check for SACD.I’m not hanging around for the nhs to pile on more neglect and I’m determined to stop things worsening.I will certainly post when I get some answers but right now all I can say to reassure you is a lot of us have those same symtoms,I have confirmed pernicious anemia by the way.good luck with gp and neuro glad your getting that referral.x
Hello, My pins and needles in my arms and legs have been very intermittent. So much so that for a long time I didn’t really recognise them for what they were. I used to get waves (best way I can describe it) of tingling in my arms and legs as I was waking up in the morning. It gradually got worse and my B12 level came back low 109ng/l. Previously it had been 129ng/l which I now realise was also low but for some reason our local lab has a lower level of 120ng/l.
Anyway all the tingling went away after 4 of the initial 6 alternate day injections . Two weeks after they stopped the tingling returned. I tried to get the gp to reinstate injections alternate day as per guidelines but they refused. My pins and needles became permanent rather than intermittent and much worse than they had been prior to the injections. I tried VERY large dose of oral and sublingual B12 which I think might have stopped the deterioration but didn’t make it better.
After 3 weeks of recurrence of my pins and needles I started self injecting. A month later my pins and needles (and other symptoms - fatigue, brain fog, mood swings) are much better but recovering more slowly than first time round. Pins and needles are now intermittent again but taking much longer to go.
I don’t know how many other people experience intermittent paraesthesia but certainly it can be aggravated by exercise or temperature.
Dont wait any more and dont be afraid. You have to self inject minimum 3 times a week. I am with per. neuropathy 5 years with level of B12 50 pg/ml at the beginning of 2017 , all of your symptoms , now after 650 shots l am much better ! Good luck !
Similar pattern to my neuropathy in my feet & loss of reflex. This was finally assessed and confirmed by a Neurologist after a protracted diagnosis. With the support & information from this forum I was able to also make my case for 6 weekly injections. Although not completely resolved I have significant improvement. Good luck.
I read somewhere that kidney failure contributes to peripheral neuropathy. Google it if you have any kidney problems. The toxins that build up tend to irritate the nerves a little. If you ask your doctor he/she will say "no, neuropathy only happens to diabetics".
All I can tell you is the same thing is happening to me and it’s terrifying. Neuropathy was my presenting symptom, went away after my levels were sustained at 2,000 for a few weeks, but it just recently came back after my dosage was reduced. I was worried why it had returned after I had nearly no symptoms for over a month. I’ve been to two neurologists who have ruled out all other causes but it’s still scary. I’m looking for research to show my doctor so they can help me. I need to know how high my B-12 levels should be maintained so the neuropathy doesn’t come back and can’t find anything. I also live in a remote location and can’t self inject and also have to wait 3 weeks to get lab results. So if there was a standard rule of getting 1,000 mcg biweekly to prevent the neuropathy that would be great. So far I can’t find any literature on this and am told I will receive 100 mcg a month. I’m removed to hear I’m not the only one with neuropathy. I thought I had MS it ALS at first so it’s been a scary ride.
Sorry to hear you’re having problems too.So far I’ve had no luck getting a doctor to believe this can happen with “normal” B12 serum levels, even after paying £190 to see a consultant GP suggested by my NHS GP.
At the moment I’m having a slight improvement which may be down to B12 nasal drops from CureSupport (Netherlands) curesupport.com/product/cur...
I'd just like to point out that those B12 nasal drops have sesame oil as an ingredient. Those who are allergic to sesame might wish to avoid them - including those who are allergic to peanuts as there is a known tendency for cross-reactivity.
I had a look at the nasal drops Brocher quite pricey when you include postage aren’t they.How much do you use daily and how long would that tube last at a guesstimate? My professor has just referred me to a neurologist professor in oxford ,he’s supposed to be one of the best.
I always watch any you tube videos they have made before I commit as I can tell how approachable they are from that.
I did get offered a private appointment next week but can’t make that one so I’m waiting on an alternative date.
I have very high levels of b12 in my blood serum but if I miss an alternate day injection my symptoms come back very quickly so I’m obviously not absorbing well enough at a cellular level so I need to flood my blood in the hope more trickles over,which it does when I stick to my required frequency.
It does wear even me down,I’ve had a really crap couple of weeks with not only the neuro stuff but muscle spasms in my back which are affecting my legs and feet and bum I’m feeling a bit weary and teary when I shouldn’t.
I hope you get some help soon it’s a never ending cycle isn’t it.good luck x
I use 2 drops per day. I’ve only been using them for a month, but no sign of the bottle running dry so far. A different brand (link below), currently out of stock, suggests there are 100 drops in a bottle, so I’m hoping to get at least 6 weeks out of a bottle.
I’m really pleased if they are helping you,we can’t put a cost on health really can we.I’d love to not have to inject at all or to be able to reduce the frequency and ive tried and failed on numerous occasions,y husband did well on the b12 oral spray from better you, we had his blood retested after a few months on it and his active levels were very good but it did zilch for me,anyway best of luck and thank you.x
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