Pernicious Anaemia Society
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Low B12 and idiopathic poly neuropathy

My B12 of 174ng/L was described as borderline by my GP back in December when I consulted him about my numb toes. Unfortunately, I then involved a private neurologist, who diagnosed idiopathic poly neuropathy. He discounted long-term omeprazole and beta blockers as the cause and also my family history of PA and B12 levels. ‘Come back in six months and we’ll redo the EMG’

When I started to lose sensation in my fingertips my GP prescribed a B12 loading dose of six B12 injections between March 19th and the 29th.

I began three injections a week from 11th of April so that is another eleven injections, eight obtained privately and then on the NHS. My GP had to get permission from the health authority for this.

My concern is that when he assesses me on May 24th these injections will be stopped. So far my hand tremor is improved, I have more energy, the depression has gone, my lifelong anxiety has almost vanished and I can walk in straight lines again. BUT my fingers are as bad as ever and my feet are WORSE than when I began the B12 injections. They feel like I’ve been standing a long while in the cold, as if the flesh has been stripped away from the underneath of my toes and forefoot.

Does this mean that the answer isn’t more B12 injections? I don’t think it’s thyroid related (TSH 1.15mu/L last December). I’d very much appreciate any advice on the way forward and the experience of others with similar symptoms.

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I had a low reading for B12 3 years ago . (150 )I also had numb feet , which was diagnosed as “ideopathic “ by my GP . No treatment advised. Blood test normal .....Went to private GP at a Nuffield hospital who found that I had PA( using that very unreliable test for Intrinsic Factor Antibodies so I was lucky to get a positive result ) . Went to my own GP( narked because I had gone to private doctor ) who reluctantly gave me 5 ( Gloucestershire ration ) loading doses , and the bog standard once every 3 months injection . My numb feet were not a sign of neurological symptoms , She had consulted other colleagues in the practice and they agreed with her , So I had to take matters into my own hands , and self inject , This took some time as I didn’t know about this wonderful forum . Result ? I inject weekly and have more or less got my life back . Feet no longer numb , but they burn like hell .I lhave learned to live with that and I can drive .

My advice . Self -inject . You waste valuable time messing around with the NHS doctors . . You can do yourself no harm with self-injecting . Millions are wasted by not diagnosing and treating B12 deficiency and P.A. , which result in awful irreversible symptoms . The conditions progress and the patients are left with irreversible symptoms . I know someone who took Omeprazole for many many years and had totally numb feet . 2 expensive spinal operations later —— still has numb feet , and falls a lot resulting in fractures.

You body is beginning to recover , which often results, with things actually getting worse before they get better . You need injections MORE OFTEN . You can inject daily without any danger . BUT do take vitamin B9 ( called folic acid as a supplement and folate in veg and fruit) I feel for you having been in a similar position .400 mcgs PLEASE consider self injection .

I’m sure I sound somewhat demented , and I do feel it when I get on this subject . I know that there are people out there who are suffering unnecessarily , for lack of a cheap injection (£1.00 if you buy in bulk ) IT IS A NATIONAL SCANDAL .I am convinced that my mother suffered from PA .and died a horrible very slow death as a result -The end was a kind of dementia. So her last years were horrible. MAKE SURE THAT IT DOESNT HAPPEN TO YOU !!My very best wishes 👍

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Thank-you for sharing. I'm sure you're right about the number of people who go un-diagnosed. I was very sorry to hear about your mother. My own symptoms go back to 2016 when I developed a tremor and had a sensation like there was a nest of bees in the side of my head which later resolved into tinnitus. I did not make the B12 connection myself until early this year despite both my late mother and my husband having been diagnosed with PA. In my defense, when a neurologist and a GP have both discounted it, I didn't know any better than to trust them. Self-injection is very probably the way forward for both me and my husband. His three monthly injections don't address his level of fatigue and brain fog and his sleep is awful because his legs twitch most of the night. He also has dreadful short term memory.

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Ok so I am very interested in this post. My mother had pa. I developed neuropathy last year and had a couple of borderline tests but ended uo getting treatment after writing to my gp basically telling them that the current guidelines say you should get treatment if you have neuropathy with a borderline test. Initially neuropathy went. Dose gets dropped to once every three months and neuropathy has come back.

So ai will now have to convince them I need b12 more often. It seems from postings on here that this is common.

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Yes it is common . I wish you luck in getting more regular injections . Most people fail .Your B12 blood serum will be high , and that is used to deny you extra treatment . I hate to sound pessimistic , but having been in a fight with my GPs, more or less being accused of being a hypochondriac, and that more B12 would be toxic , I had to abandon the fight, and self-inject . I bless the day I did. So be prepared ! If you can buy in bulk (100 of everythingyou need) -ampoules, needles syringes ,swabs , an injection won’t cost more than £1.00 . Amazing value - mostly cheaper than a trip to the doctors by car or bus ! But I wish you the very best of luck !🍀🍀🍀👍👍👍

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Thanks. Yes it may be a fight but I was able to get extra injections in the first place. They only wanted to give me 3 monthly injections but I insisted on mire and they gave it (after a referral elsewhere). I feel confident I can make myself heard. If not I will buy it myself. My mother was given 3 monthly injections and I am sure this was inadequate and I believe she suffered a lot as a result.

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Hi magirose,

Do fight, what have you got to loose? I have just managed to get my B12 reinstated again and have been given a prescription for 10 weeks supply. I know I will have to have another fight in 10 weeks time and it does get a bit waring, but because I believe I am right and the GP surgery is wrong, I will keep fighting for as long as I can.

Good luck with everything.

Anne

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Do you have a link as to where

I could buy these things ? I haven't

been successful in finding any.

Sure would appreciate it.

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If you are in the U.K. get your ampoules from

“ versandapo.de in English”

Type all that and you get the site of a very reliable professional German online pharmacy . Search for Hydroxocobalamin , and a drop down list appears . Click on Hydroxocobalamin acetat .I buy Rotexmedica ampoules 1mgx1ml . I buy 100 for €52.90 or 10 for €7.99 . They have about 2 1/2 years use by date, I always buy 100 . Courier costs 9 Euros .Unfortunately they will not send to US . mycare.de in English will send to US ,but they are slightly more expensive and courier costs are higher also .

Needles , syringes , swabs and sharps box can be obtained from Medisave.uk and Amazon U.K. .. You need to know which method of injection you will use -sub cutaneous or IM ( Intra muscular ). Google it and read all about it . You can view videos also and get instructions online .

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Sorry , forgot —- do take a daily folate tablet 400ug .or lots of fruit &veg with folate . It’s important .

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Ok. Haven't been doing folate so will address that too. I will try to be more diligent and eat very healthily currently. But appetite is flat so maybe not getting enough of the good stuff. Thanks for your advice. Have been feeling low again but hopefully now will see an improvement again.

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I will also add to this post...I have had two treatments in the past for h pylori. Have chronic gastritis (not currently treated but under control through diet...not eating much carbs/sugar which has helped). I also have an auto immune disease, a form of vasculitis. I think a lot of people I know with auto immune issues....I am a member of a few help groups online....seem to have b12 issues. I don't seek to explain it but merely an observation. I am a lifelong sufferer of auto immune disease really which has fluctuated over the years from mild to severe to almost complete remission. The b12 issue has come up within the last two years and I am now 55 yr old. Just giving a bit if background for anyone else who may be suffering lots of random symptoms. Sometimes they have an underlying connection.

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My husband's gastritis got worse after antibiotics for Hpylori. He was rapidly losing weight and looking gaunt and very ill. Doctors wanted to give him long term Losec (which blocks B12 and other nutrients and minerals). I began injecting him with B12 (I've been self-injecting for years) and giving him folate and other co-factors.

Within a few weeks his symptoms were diminishing and he was able to eat normally again. He was back to his normal weight after 4 months. His last OGD scan a few months ago showed gastritis was completely healed.

B12 & folate are really necessary to re build those tummy lining cells and to prevent cancer of the stomach, especially if one has PA. He also has PA in the family but we were getting nowhere with doctors to test him, so now he self-injects too and has never been better. Full of energy and great appetite and no gastritis or pylori or other PA symptoms (he was becoming achy and down in himself and slightly unsteady on his feet, thankfully all fine again now).

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I really hope so too .🍀👍

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My mum wasn’t diagnosed B12 deficient either, she died a slow death between 60-84 when she finally died. 7 weeks before her death some one found it a good idea to give her a few days B12 injections to pep her up so she could celebrate her 60th wedding anniversary with my dad, propped up in bed, she came alive for awhile, alas no one suggested to continue giving her more. I had no idea about B12 deficiency then. It was not until I was in my my fifties I was finally diagnosed being deficient. ( Although I had received numerous so called vitamins injections throughout my life).If I knew then what I know now I might have been able to speak up for her.😔

Doctors are knowledgeable but are no gods, so question and do your own research, on this site you can find a lot of good advise to help you along. Like many here, I took matters in my own hands and manage my self quite well. I have a good life again, I work and can be relied upon. Also contributing to the economy.

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A sad story about your Mum . Glad to hear that you have taken matters into your own hands . This is a great site to come to . All the very best to you . 👍🍀

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Sad, and similar story here. Poor women - robbed of life.

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You are obviously responding to the B12 and improving - which is good evidence that B12 was part of the problem.

It isn't uncommon for aches and pains to actually get worse when you initially start treatment - there are several ways that B12 can cause neurological symptoms - one is through the way it helps maintain the protective layer around cells - which is quite slow to heal if damaged. Another is the role it plays in recycling neurotransmitters and this would be expected to recover very quickly after you start treatment. That means that signals that hadn't been coming through for a while to your brain will actually start getting through better - but your brain has got used to the signals being weak so a stronger signal gets interpreted as 'pain'. It takes a while for the brain to adjust to this but it does. It may be that by the time you get to the end of your loading shots things have calmed down.

On the 24th you need to emphasise the things that have improved ... and acknowledge that somethings still aren't right. If you have been B12 deficient for a while then it would be unreasonable to expect everything to resolve and respond in a very short time.

The BCSH guidelines, where there is neurological involvement, is for loading doses to continue until symptoms stop improving.

onlinelibrary.wiley.com/doi...

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Keep at it then? I'm hoping to start self-injecting. Whatever the outcome of seeing my GP on 24th, the logistics of going to the surgery three days a week are tedious and there is also a risk of picking up germs. Do you have any knowledge as to whether methylcobalamin is more appropriate for nerve damage than hydroxocobalamin? I am currently waiting for results of testing for intrinsic factor and parietal cell antibodies although I realise that these tests are inconclusive.

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I have myself tried Methylcobalamin ampoules ( obtained from Arnika pharmacy in Munich Germany until they gave the agency to Intravita in U.K.) They didn’t help me anymore than the bog-standard Hydroxocobalamin from versandapo.de in English .

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Methyl is commonly mentioned as being better than hydroxo/cyano 'because it is the form used in cells' - however this ignores the fact that there are actually two forms used in cells - methyl and adenosyl - it also ignores the fact that the form that is introduced to your blood is actually stripped of the methyl part so it can be combined with another protein so it can get into your cells, is then stripped of that protein and converted to whichever form is needed by the cell at that time.

Some people do find methyl suits them better, some don't and some even find that it makes them feel quite unwell. Not sure that all the genetics are understood which means that it wouldn't be possible to say with any certainty which form would suit you better.

My personal experience is that a cocktail of cobalamins seem to work best for me - methyl does help me with some neurological issues, adenosyl helps with incontinence. methyl does absolutely nothing for my neuropsychiatric symptoms but hydroxo works quite well for that. You are likely to be completely different though and the only way to find out what works best is to try them. I also use a mixture of sublinguals (adenosyl isn't really stable in solution), nasal sprays (methyl/adenosyl) and injections (hydroxo/cyano)

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Lots of food for thought there. The worrying thing for me is that if you're not bright enough to be your own doctor you are very unlikely to recover. It's scandalous that there seem to be no doctors out there with a specialism in B12 deficiency and PA.

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GPs are generalists - there are so many conditions that it isn't really surprising they can't do anything. Unfortunately B12 tends to cut across the way medics specialise.

To be honest my own family experience and personal experience is that even conditions people think doctors understand well, aren't understood well. In most cases this is because we are still trying to understand the intricacies of conditions like thyroid, diabetes, and a whole range of auto-immune conditions.

It is quite easy to get to grips with a single condition or even a couple may be easy if you have time to concentrate on them but otherwise you only scratch the surface of everything.

There was a recent report on the treatment of people with chronic conditions in the UK which concluded that adequate treatment is also hampered by a system in which someone may not see the same doctor twice and recommended that people with chronic conditions, particularly those with more than one, should have a specifically dedicated GP - as is supposed to be the case with older patients ... but that's no guarantee either.

That isn't to defend medics who aren't capable of admitting they don't know everything. And I really do wish they understood statistics a lot better.

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I sometimes think over-prescribing creates it's own momentum. Doctors feel that the patient expects to be given drugs. Supplements have to be preferable to pharmaceuticals wherever possible because the body doesn't fight them.

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supplements can cause problems - B6 being a classic example - but it would be good if GPs weren't so closed to supplementation and asked about it - particularly in relation to testing as some supplementation can have effects on test results - eg Biotin.

Personally I'd rather people made sure they really needed supplements before they took them - particularly when talking about the ridiculous levels you need to take if you have a B12 absorption problem - but could, even though B12 is not toxic, have an adverse effect in someone who doesn't have a B12 absorption problem. Diet is the best source.

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Hi ABC852031. I am so sorry about your suffering. Because most of your symptoms have been improving, it seems to me a good indication that you are very likely on the right track with B12 injections.

It is my understanding that lengthy omeprazole treatment can result in B12 deficiency.

It is not unusual for sufferers to experience temporary worsening of symptoms (or some of their symptoms) once their treatment has begun.

The *conventional wisdom* is that any neurological complications lasting for more than the first year of treatment will necessarily be permanent. I assure you that the *conventional wisdom* is wrong about that. Improvement can come over much longer time, many years longer. Never give up!

I had had other neuro complications for much longer, but my feet were tortured in continuous severe pain for some seven months before I was finally diagnosed and my treatment started. Then -- soon after the start of my treatment -- my hands felt worse, nearly on fire, and my feet felt worse than ever, beyond on fire. For the next two years I mostly kept to bed with my feet further elevated. Over that time (the first two years of treatment), the feeling of heat in my feet slowly reduced from feeling like beyond-on-fire, beyond-white-hot, atomic-like heat to feeling like a reddish-hot smolder. Lightning-like pain strikes in my feet and the rest of my body have come less frequently as my treatment time has gone on. Now my hands do not feel quite right (especially one, which sometimes feels a little burning), and my feet (especially one) feel much as yours do, with some partial numbness and usually at least a smoldering type degree of burning sensation. I am not as tired as I had been for decades (some thirty-seven years) before my treatment started, but I am still always very tired and must rest most of the time. I have had some other improvements too. I have been in treatment for over nine years now.

With your apparent neuro complications, I would not expect such a speedy resolution of them all -- your treatment has just very recently got started. Improvement may come only very slowly. Whether or not you can have full recovery over time, it is essential that you continue treatment -- not only to permit your fullest possible recovery, but also to keep things from getting worse. Do whatever you must to keep getting treatment.

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I'm glad that you're undoubted determination and bravery have, at least partially, paid off. It really puts my total of eighteen injections so far in context. Thank-you.

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You are welcome.

You may get back your life as you had it before -- or even nearly so -- but with a lifelong routine of injections.

You are never alone here. We are all pulling for you.

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I am genuinely touched by all the help and support I have received from everyone.

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Good morning from the US,

Im so angry about the state of the medical training and advice patients recieve globally. It is not much better here concerning doctors knowledge unfortunately. But as someone replied in a prior post, PATIENT, HEAL THYSELF.

As i struggled with numerous b12 def symptoms, i was finally tested for and diagnosised with h pylori. You state you were taking acid blockers (and have stopped) so here are some questions.

1. Do you have h pylori?

2. Are you getting enough copper to induce remylenizatiion?

lpi.oregonstate.edu/mic/min...

I had/have b12 injections and many symptoms disappeared or improved but i was confounded by the remaining fatigue.

My ferritin (stored iron) was good (above 80) but my iron saturation % was at bottom of range at 21%. No doctor looked twice at this number. Jerks. I feel tired. So i researched myself. Iron needs enough copper to work properly.

So i research copper and HELLO!!! Copper is needed for myelin sheath repair. And more importantly for you, myelin sheath repair is needed to reverse neuropathy.

Are you pale? I thought i was naturally paler than others (blond haired, blue eyed) but NO. I am now noticable darker. People that see me a couple times a week have commented on how nice of a tan i have. And im not getting anymore sun than usual. I of course know for sure as my bum has also darkened with the rest of my skin.

Copper can be toxic so i only take 2 mg daily. Jarrows zinc 15 mg/ copper 1 mg. I take 2 a day.

My tingling/pins and needles in feet and hands has disappeared and fatigue, slow thinking much improved.

I hope this helps as your neuropathy sounds aweful.

Best of luck and health

Kimber

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I don't know if I have h pylori. I wondered, but feel the more I widen the discussion with the GP, the more likely he is to bail. When I'm on the omeprazole I often feel like I have very mild indigestion - sore stomach lining. Now I'm off it though I need to sleep sitting up and the fatigue is killing me! I think you're right and I may well need a wider regimen than just B12 injections. Thank-you very much for your advice, and good luck with your own recovery.

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Well h pylori increased my wbc to between 7.7 and 9.7 only the last couple of years of testing, Never over the range which is 10 point something. It is a chronic infection and needs iron so the body's response to this is to reduce the available iron leading to fatigue.

I completely understand about not wanting the doctor "to bail" but that is what is so so so very sad about our whole situation. Idiopathic means of unknown cause so finding out the cause is the what is needed!!! If h pylori induced b12 deficiency and is effecting your iron saturation % (not ferritin or hemoglobin) then you just need to have antibiotic treatment. Should be simple. Instead we sound like hypochondriacs for wanting to be healthy, productive members of society!!!

I would test privately if i had to. Even in the US i had to get in an arguement to get my doctor the order the test that i was paying for out of my own pocket.

Please consider it

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I will definitely get it tested privately. Then it's one less question to ask.Never mind the doctor, somedays I think I'm a hypochondriac! Nearly all the symptoms I have are so difficult to quantify and vague that they could mean anything or nothing. As well as that, how much they bother me depends whether I'm feeling good mentally or not (or maybe it's the other way round). It's hard to be assertive with a doctor at the best of times, never mind when even you doubt yourself. Off for a cry!

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I also had horrible reflux , and stomach pains and went to see a gastroenterologist , who told me that PA patients have low/no stomach acid . I asked for my stomach acid to be tested , and he said that was only possible in research conditions .I read up a bit about my stomach problems and came to the conclusion that a probiotic might help to restore the natural flora which was being upset by the lack of stomach acid, which enables the bad bacteria to flourish . Lo and behold ,a course of Symprove worked wonders . I now help my gut by eating a little raw organic sauerkraut every day . ( home made or buy it at a health food shop) -no more stomach problems or reflux .

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I'll definitely try the Symprove, although I think my problem could be mechanical in that the sphincter doesn't close properly as a result of mild Marfan Syndrome.

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The oesophagal sphincter also doesn’t close properly if there isn’t enough concentration of acid in the stomach . Even if only a weak solution of acid gets through , it is sharp enough to cause pain .

If there is enough acid in the stomach the message gets through to the sphincter , and it shuts tight .

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If I eat acidic or fatty food I get reflux. Otherwise I'm fine while I'm upright. To sleep without an acidy throat I either have to sleep sitting up or take omeprazole. When you first started on the sauerkraut, did it help immediately or get worse before it got better? Perhaps another possibility is that the reflux is a neurological manifestation of B12 deficiency. Probably I'd be fine on a diet of steamed fish and rice but its so damned dull. Forty years ago, I'd have tea and twenty minutes later I'd be in the sportshall trampolining with no ill effects, how I miss those days!

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I started with Symprove which was really fantastic , but so expensive . So I researched on the internet and found that organic raw sauerkraut contained no end of probiotics . It has helped to keep me free of the gut problems - Reflux, stomach pain and awful burping . I really don’t know if this information will help you. I can only tell you my story . All of these suggestions will cause you no harm whatsoever, and may be will help . I was prescribed something called Metaclopramide , which was absolutely useless , and had horrible side-effects to boot . I think natural remedies can often help . Omeprazole totally neutralises stomach acid which is an essential element(along with the Intrinsic Factor ) in the absorbtion of vitamin B12 , and other vitamins and minerals . After a course of Symprove , my gut problems were gone and to keep that going , I started eating a tablespoon of organic raw sauerkraut daily .

Its possibly the Omeprazole that is causing your B12 deficiency , and if you really cannot do without it , then B12 injections ,which by-pass the stomach, will be necessary .Bear in mind that with the resulting low/no stomach acid it would be wise to take a good multi-vitamin and mineral supplement .B12 is the most difficult vitamin to absorb , and the consequences of deficiency are really serious .(deadly serious! )

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I'd be daft not to try symprove and/or sauerkraut. It seems as though with pharmaceuticals there is always payback whereas supplements don't disrupt homeostasis. Thank-you

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👍👍👍🍀🍀🍀

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Your symptoms sound similar to mine. I managed to persuade my GP to give me fortnightly injections but it still wasn’t enough. I now supplement his stuff with self injection so I’m having two a week. That keeps the fatigue and depression at bay.

But it did nothing for my neuropathy. That started after I started the jabs and got worse over the next 6 months.

I saw a neurologist and told him about my self injection, so he could rule out B12. After nerve conduction studies he diagnosed me with Idiopathic Axonal Neuropathy and described how it would progress if he were correct. One year later and it was just as he described. It’s virtually stopped getting worse. Apparently my neuropathy is caused by being too tall!

So self inject at a frequency that suits you, but do tell the neurologist when you see them. There are a lot of different possible causes. Some can be treated so it’s helpful if he can rule out B12.

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Interesting, my neuropathy started before the injections, but as I'm 5'9" as well as b12 deficient that's an extra risk factor. Think they're both connected because immediately after the first injections my feet became very painful. Now they're back to being numb. Thanks for the info.

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Hi,

I've written some every detailed replies recently. Might be some useful info if you search for them.

Sorry too tired to write a long post.

UK B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12d.org

b12d.org/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

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Have you checked your vitamin D?

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Going to St Thomas's Hospital tomorrow for blood tests. B12 is a given because of injections but I want to check vitamin d, folate and ferritin. Thank-you for your advice.

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