Since my GP would not prescribe B12 injections and is sceptical of my diagnosis I ordered one hundred B12 ampoules from the German supplier recommended on this site late on Friday afternoon at a cost of around £50. They arrived first thing on Tuesday after the Bank Holiday. The 100 syringes were ordered online on Saturday from Medisupplies in Bournemouth and swabs and sharps disposal boxes were ordered on Amazon UK. By Tuesday afternoon for less than £100 I was fully equipped for 100 injections. Result!
My husband has now given me the first two injections on Wednesday and today. I have had no ill effects although I have noticed slight tingling in my finger tips which is a new symptom. I gather from previous posts that this can happen as nerves that were apparently I damaged start to repair. My feet are still tingling and my energy levels are not markedly different, but i don't expect these things to improve overnight.
My recollection of my grandmother's paralysis occurred quite rapidly. She was a First World War widow and very stoical and I don't remember her complaining until she started to lose the feeling and use of her legs. The symptoms then escalated rapidly. Our GPs at the time were very good and I'm sure my mother and her brothers would have insisted she consult them if she had had any significant symptoms previously.
I was not prepared to wait until I had serious neurological problems before receiving adequate treatment and I feel quite happy taking control of my own treatment. I shouldn't have to do so and recognise that as a doctor this is probably easier for me. I believe my profession is failing all of us very seriously and for many patients it is far too much additional stress to add to their health burden. It is, however, quite easy to manage your own care with help and advice from this excellent forum.
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Dewbuc
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So pleased that you have taken control of your health. For a pound a shot you will get your health back . Think how cheap it is for the NHS buying in bulk ! So what can we do to try to ensure that future generations don't have this problem ? We can donate to the Pernicious Anaemia Society , who under Martyn Hooper's auspices are pressing the case for more research into P.A. . The Pharmeceutical Industry isn't interested - there are no big bucks in a product that cannot be patented .
It might take sometime to get your health back completely , and it might not happen 100% . But it's great to know that you cannot overdose . But don't forget folate/folic acid. Green leafy vegs are good -Also asparagus if you are feeling flush ! Very best wishes to you .
Thanks. I wouldn't have got to this point, even as a doctor myself, without the help of this forum. It is an invaluable resource with such genuinely interested, caring and knowledgeable contributors. Thank you to everyone.
I suggest that when you are fit and able again that you perform a set of strenuous aerobic exercises in your doctor's room and stick your tongue out at him and say "Ah! B12".
But before you do that though please ensure you have a healthy level of Folate.
Probably more like "Ah. Baa Humbug!" My husband has written apologising for my assertiveness/aggression, but including the Guidelines and an explanation for my "bad" behaviour! He's just too polite, but then it was only when I was on my own that I was really insulted and after that he was the one to encourage me to self treat!
Exactly- "It was only when I was on my own that I was really insulted " That doctor wouldn't have said what he/she said if there had been a witness!!!! That tells us something '
Absolutely. I suspect he would have been less ready insult a man, but a woman on her own, even though she is a doctor, is fair game. Sadly though it's not a game!
I always "advise" the taking of "someone" with you to an appointment to avoid being "pooh pooh'd". Sadly of course it's not always practical or possible.
My wife used to be a "dinner lady" and she still can recreate that "look" that would terrorize the kiddies and or GPs
We met when she was a checkout girl at Tesco 21 years ago and I did't know she had a daughter when I started to "chat her up". But then perhaps I should have expected it would be a case of "Buy one - get one free" and I gained a lovely step-daughter into the bargain.
And no - she has to come with me on my appointments - sorry!
I first saw Gill "sitting at the receipt of custom" whilst doing my weekly Friday afternoon shop some four years after my first wife died in 1992.
She looked so neat and petite sitting there that I found myself "joining her queue" each time and at Christmas I dropped a card on her "desk" which read,
Now at this time of peace and goodwill
It's time to remember the girl on the till
She chats as she wraps and she tots up my bill
And although I'm not certain I think her name's Gill.
Gill had worked out that I was a single man with a cat from my purchases. Gill (who was not wearing a ring) was divorced after her husband deserted her and her (then) five year old daughter some fifteen years before.
We married in 1996 and celebrate 21 years next month.
I've been well blessed with my two wives. I met my first one Valerie on her 15th birthday (I was coming up 19 & a half) we courted for over 4 years and were married for 27 years, Sadly she died 25 years ago at the age of 46 whilst undergoing open heart surgery leaving me with two daughters and a cat.
I also got (new) tingling in my fingers with the start of regular injections - it wasn't accompanied by any numbness or altered sensation though. It took around 20 injections for my leg parasthesia to resolve. I'm now in the process of trying to determine the right interval for me between injections.
Me too Jennylind. Not being a nurse or a doctor I don't know when I should reduce my injections from one a week. At this stage I don't know what's normal and what's not. At 68 we put a lot of things down to age. I don't want to ask my doctor either.... just in case!!! She doesn't know anyway and is too busy when I'm not actually looking 'sick'. I feel so alone wondering what best to do.
Love everyone here though as I'm so well as a result of the encouragement and confidence received from well informed people here, as I'm not well informed myself. If you come up with a suggestion let me know?
The way I decided to approach the frequency of injections was this: to initially follow the NICE guidelines and inject every other day until there was no further improvement in my symptoms. My clearest symptom, parasthesia in my leg, resolved completely after a time. Then it came back one day after I'd had little sleep and a very hectic day. It went away a couple of hours after I decided to have an injection on a 'no-injection' day to see what happened. It came back on the next day I didn't inject. I'm now parasthesia-free, but injecting every day. In a few days time, I will try and space them out to every other day, then every third day, then every fourth, and so on, until I find what works for me, be that daily, weekly, monthly, or whatever.
Jennylind, thank you. I will look more closely at how I feel from now on. I've just given myself an injection as I suddenly got extremely dizzy almost to nearly falling for most of today. I don't know if that's a symptom of PA but it's scary. It's been 7 days since I took an injection which is a day longer than the last few weeks which was one every 6 days. I don't like the thought of injecting as it's all new to me and I don't even know if I'm doing it right or in the right place. I'm just 'winging it'!!. I'm not afraid just not sure. I have watched youtube videos but when it comes to myself it seems different! I've big enough thighs to get it right but when I sit down I seem to loose the right spot. This time next year I'll be an expert! Jill
I had always assumed (yes, one should never assume) that a doctor would be treated with much more credibility and compassion from a GP. Being a (retired) ward sister, my GP 'says' he gives me credit for being a professional but, in the next breath, says 'sorry, I can't do anything more for you'.
So, in that sense, I find it (sadly) very encouraging that you, as a doctor, are having to self-treat What I mean is that I thought I've not been given credibility and felt I'm being looked down on because of being a nurse, and not a doctor!!!
I feel it's shameful that doctors, even 'specialists', do not understand the importance of Vit B12 and are not (usually) prepared to find out about it, let alone to recognise a patient with a deficiency, or to trial B12, when there is so little risk and cost attached.
In fact, the medical profession are clearly more likely to prescribe something more costly yet only treating one symptom, rather than attempt to fix the route cause.
I, also, now self-inject and have experienced considerable benefit already - and only a month into this, re injecting I have to say, it did take a couple of weeks before I felt some energy returning, so do be patient, it will happen
The lovely, now late, Dr Kate Grainger started her, "Hello, My name is..." campaign because she was taken aback by her treatment as a terminal cancer patient.
Once upon a time health professionals respected one another. Sadly medicine has now turned into a business arrangement validated only by tick box technology.
A surgeon once told us patients were asked to fill in a form about their in patient experience. It covered everything but "was the surgical outcome good!"
My profession, and I suspect yours, really has now put the cart before the horse, It's very sad and I no longer feel proud to call myself a doctor. It used to be a vocation, but sadly that is no longer the case for many/most doctors.
So glad you have taken the plunge Dewbec and didn't leave it as long as I did. Never did get a diagnoses, had to go privately in the end but quite honestly after 6 years I would have gone ahead with SI, diagnoses or not. After 4.5 months seeing good improvement in neurological systems. I hope you can influence the system from the 'inside', in the 21st century its a tragedy that so many people have to suffer and fight for such an inexpensive and innocuous treatment.
So even if your part of the medical. Profession this is happening?what chance do the rest of us have then?I have been,if I'm honest riddiculedby a GP for giving her evidence that I wasn't being treated according to guidelines.I presented her with 5 documents relevant to UK guidelines and information from a consultant haematologist regarding my treatment all of which she refused to acknowledge.She was very intimidating and raised her voice on several occasions.I couldn't. Believe what was happening and left in tears.My son is a surgeon and is absolutely horrified .He offered to go back with me but I don't want him involved.I feel that they would get their back up even more if they thought I was undermining them by taking my son.He said he always. listens to patients opinions and would never upset anyone and her behaviour is professionally unacceptable.What can I do its my word against hers.I'm going down self injection route so don't. have to go near doctors again hopefully.Have to wait until son comes over to help me though as I cant bring myself to inject.He doesn't live near me so tttfaIll have to wait.
I agree. I was on the brink of tears after my last consultation and only kep them at bay because he made me so angry.
I think it is utterly inexcusable to treat any patient with such disrespect and to be so dismissive of their real and scientifically backed concerns.
I was prepared to abandon him and the NHS completely, but my husband photocopied the main points of the guidelines from Martin Hooper's book. They are concise, just over one page and include all the essentials. He included them in a letter to the GP explaining that I was very upset and because of my very strong family history this was the reason why.
He phoned my husband, but offered no real apology. We will continue on the course of self management as I don't want to go back ever again! No wonder patients are so disillusioned and A & E departments so busy!
Margareta12321 I only started Self Injecting less than 2 months ago. I'm not at all brave Just thundering MAD with my doctor who's first port of call was 'I must be depressed' and sent me for counselling. I went because if I didn't the doctor would have said I resisted. After three sessions (doc said I would have 8 to 10) counsellor said I was in no way depressed and she was getting back to my doctor to give my place to someone who needed it. I'm slow to go back to my doctor now because all I want to say she's not going to like.
Thanks to everyone here I got the courage to literally 'stab myself in the thigh' and I now have control of my life and health. I've had PA for 20 odd years, I'm 68 but didn't have neurological symptoms till recently. Get your caring son to show you how to inject next time he comes to visit. Okay, it's scary at first and not a nice injection but I can't compare it to anything we might be familiar with as it really doesn't hurt even for a second and it's only a second. A headache is much worse!! lol! Jill
Thank you Jill,Seems so many of us are not being listened to.I agree if not for aa you lovely people on this site I would feel so neglected.I don't mind getting injections but looking the needle in the face stops me from going ahead.I know I will do it but will feel more confident when he shows me how.Im glad you have managed to do it and. It is helping.Im determined I'm not going back to GP so must go for it.
I know what you mean about the size of the needle. I had always got my injection in the butt from the nurse as I don't have enough muscle in my arms so I never saw the needle till recently and when I did my first reaction was 'does all that go in'? and it does!!! You just hold the syringe like a pencil and throw it like you would playing Darts at the pub into your thigh!! lol!! THEN it doesn't hurt. Do it slowly and OMG!!! You will be so proud of yourself then. It's trial and error at first but gets easier. Good luck!
Margareta12321 Your not alone in thinking that, I haven't a clue what I'm doing but I do know 'slow' hurts and 'fast' doesn't?? If you have plenty muscle in your thighs then not much can go wrong. It's a whole lot better than not injecting and waiting 3 months for your next one? What do you think might go wrong?
I'm worried about needle breaking or air bubbles.I wish I had the guts to just do it.My son says its easy but he's done it loads of times.Do you actually stab it in?I really need it done soon my symptoms are really bad.
Margareta12321, Don't get me wrong I hate the thought of injecting but love the injection!! If you get my drift!! The thought never crossed my mind that the needle might break so forget that one please as it won't happen. lol! Now the air bubbles problem. I let a little of the B12 out the top of the needle which gets rid of any air bubbles. I don't worry how much comes out as 99% in is better than none at all? Oh, and you use two needles one to take out the B12 and a smaller one to inject. And remember to change the needles!! Yes I DO stab it in as you might as well get the whole needle in in one go and quickly. That's the easy part. I put it in slowly a couple of weeks ago and it hurt so much I didn't want to inject again the next time it was due as it really hurt. I learnt that lesson the hard way. It goes in at 90 degrees straight in. Get yourself a syringe and practice stabbing an orange to get the feel of it. That's what nurses do when learning. I did that too and can't look at oranges in the same light since!! lol! Jill
Thanks Jill I know I'm being silly but I like to know I'm being safe.Im desperate but hopefully I can pouch up the courage.My son is trying to visit next week but I feel the need now.I think I'll try to morrow and thanks to all your advice I feel more confident.Weel see if I can pull it off tomorrow.Thanks again .
Margareta12321, Be sure to get back to all of us here with your good news, as you'll be so proud of yourself for plucking up the courage. No one says it's easy just necessary to keep you feeling healthy. It's all over in 10 seconds but totally worth it.
Thanks Bengie,My son came over and showed me how to inject safely.He done the one in my thigh today and never felt a thing.Im really feeling confident now.Im going to do every other day as was supposed to happen and didn't.Fingers crossed its not too late to get some repair.If I feel better I will not be going near GPs again regarding this.Thanks to you all for putting me in right direction when I felt helpless.
Margareta12321, Good for you and well done. Another update when you actually give yourself the first injection. A stiff G&T might be appropriate after. lol!!
Margareta12321, Look for the 'dot' on the ampules as this is the weak spot so break there looking away yourself in case any glass flies but it won't. Very well done. Another very happy person. Have you got a 'Sharps' box for the used needles? Amazon sell them too.
Here in Ireland the medical centre or the Chemist will take the box but doesn't give you another one in return so you'll need to buy another one after a year or so!! They are very cheap on Amazon.
No need to ask till next year as it takes a long time to fill the box. Be careful not to pick yourself with the used needle in the mean time. Did you practice on an orange first? I did but it really didn't help when it came to myself!! lol!
Margaretta1232 the chance of the needle breaking is minimal the air bubbles if any you expel from the syringe by pushing it up until all the contents are clear taking care not to evacuate everything.just summon up resolve and grit your teeth it is not a big deal .
Benguela as one sister to another all these stories are truly appalling what happened to respect for age? I personally give as good as I get but also self inject as at my age I feel kill or cure with the B12
Margaret's 1521 don,t let yourself be intimidated at the expense of improved health.all you have to do is prepare the syringe and needle I don,t know how yours comes but first wash your hands,the ampoules can come already to attach the needle or you may have to draw up the dose into the syringe.Expel any air bubbles before attaching a needle it should take a fresh needle if you draw up your dosage as you don,t want any of the B12 on the needle as you might get a reaction.Find a site and alternate each time you inject The upper outer quadrant of the thigh or the buttock.I clean the area first although of recent years it has been omitted to do so.also I give it intramuscularly as Subcutaneously is problematic sometimes.Take the now assembled syringe and needle and do not hesitate and plunge the needle into the site you have chosen draw the plunger back a little to make sure you have not hit a vein and then gradually inject into the area when empty pull out and again clean it seems a long process on the written page b is in actualiyu a few seconds. Don,t be intimidated If you feel squeamish try practicing on an orange until you feel confident.I had to inject so many children who naturally dislike injections that I had to do it so they didn't, know until it was all over.Best of luck.
Nrxx1234, Of course it's the real thing if you got the web site from one of the people here on this site. They are so good in giving their info to those who ask here. Good luck.
I had 100 ampoules brought over from Germany 3 weeks ago by one of our partner family and they have been injecting no problem, just like the ones from our pharmacy here in UK. Of the 3 websites I looked at they all seem to be offering the same product and mine are truly the real thing.
My GP understands my need to more frequent injection to deal with the tinglings, 'electric shocks', sore tongue and tinnitus, but doesn't feel able to support me as the haematologist wants me to stop injecting for 6 months, then to carry out tests to find out what is causing the B12 problem (I had a fundoplication 8 years ago and there is a family history of B12) - my only comment to that was 'rubbish'. They are now ringing me to get me to go for a 12 monthly health check up so I am hoping for a full blood count to check on Folic Acid status.
The neurologocal problems are so much better after half a dozen weekly injections and as I have loads left and the syringes to match there is no way I am going to stop them until there is no more improvement. Who knows I might find even my taste for red wines comes back as I do love a good Amarone which at the moment tastes like compost heap drainings.
I won't say best of luck, as you don't need luck, you have the ampoules now - enjoy your new found health as it returns to you.
If you post separately, it looks like several people in the US buy the crystals from Oxford Bioscience and mix it themselves - Hopefulandpositive comes to mind as someone who does this but others might chime in and tell you what they do. In the interim, take a look at the discussion in the comments of this thread: healthunlocked.com/pasoc/po...
Nerve damage can take up to a year to get better depending on how damaged the nerves are. If you are just having tingling then it may get better fast, if you have gone numb it can take a long time and some damage may be permanent. You should be able to see some improvement in just a few weeks. if you do not see improvement in the first six weeks taking one shot a day for a week, two shots a week for a month and then one shot a week for a month and then one shot a month or something like that, then you may have something else going on, but again, full recovery of nerve damage can take a long time.
Have you had your vit D checked, if not well worth doing. I would imagine that you are aware that your folate level should be optimal in order for the B12 to work properly.
I wish you well and hope to hear positive results soon.
Dubuffet my symptoms had not advanced so far as yours ,had difficulty managing my position in space staggering around holding the walls as I mentioned my spouse took blood and consulted a colleague giving me my first shot in the parking lot to the alarm of the person sitting in the next car.I had an almost immediate response as next day my symptoms had cleared.what I would have done when a patient had to eat liver I do not know.All the best for a speedy recovery.
Surely someone could alert the medical schools to the vast indifferences displayed to patients by the current practitioners of medicine?even though you are retired you have credibility yourself to perhaps march into one of the teaching hospitals and give lectures on interaction with the patients in ones care? To Duebuc
You probably overestimate my credibility! However, I have already discussed the issues with my nephew who is a recently doctor and very involved with Mind and Mental Health. He will raise the issue of B12 in relation to psychiatric patients in particular. As a recently retired GP, married to a practising GP, he will check with the local labs' normal range and raise the issues of changing it to reflect the reality of B12 deficiency above the current 200 level
He points out that this is the biggest issue as values at which neurological damage can occur are just not flagged up to GPs as deficient. He agrees with me that it is not widespread knowledge among GPs that neurological signs can occur without any red cell changes or Anaemia.
He is as disgusted as we are by attitudes of some GPs and their appalling bedside manner, but recognises that morale is currently very low among GPs with hundreds leaving or planning to leave in the very near future. GP positions remain unfilled in many areas.
In a climate where NHS management is intent on bean-counting and nit-picking the administrative burden on GPs has increased to an unsustainable level. Patient time is squeezed out by the need for clip board accountability. Until the current bureaucratic overload is reduced I cannot see this improving any time soon.
He reminds me that patients come in with sheaths of information from the internet and time simply does not allow it to be studied in detail for every patient.
I believe it is important to have a brief resume from a reputable source such as the British Society for Standards in Haematology to back up your case. That will allow most good GPs to spend time with you discussing your problems, but with sufficient scientific background to provide proper treatment.
As I know to my cost this does not apply to all GPs. If your treatment is disgraceful a complaint to the surgery, followed up by a formal complaint to the PCT or even the GMC may be indicated if you are still not satisfied. You can take the issue higher than this if necessary or seek legal redress. This is probably better than just jumping ship and transferring to another doctor as it will help protect other patients from similar treatment.
Sadly GPs are now treated by the NHS as hired hands to be controlled every step of the way. They are devalued and poorly treated. If patients are particularly demanding they no longer have the professional Independence required to treat patients as individuals in the way they might like. We need a return to properly valued professionals free from the fetters of unnecessary bureaucracy with the licence and responsibility to use their brains and judgement in the very best interests of their patients.
I wish I could change some of this, but sadly the task has to be tackled from on high at a national level.
I live in the US and as I mentioned have always had a rapport with my physicians due to their respect for y spouse also he trained many of them but I am aware of the NHS and it,s shortcomings as my darling brother was a physician when he retired he volunteered at a local hospital and eventually gave it up because he said it was more paper work and beurocracy than the practice of medicine.Even a little input to try and change the system can only help it is truly appalling to read post after post with virtually the same complaints. and in the meantime the physical deterioration is progressing. and unless a patient takes their care into their own hands they are helpless.
Addendum I don,t think there is any excuse to treat patients in the manner so many people on this site have described had it been only one or two I would be inclined to think exaggeration but for so many with virtually the same story even you as a colleague seemed to be given short shrift it really is disgraceful. One can equate good manners with the soothing a patients fears which are always present even on a short visit foto see ones doctor.after all the reason one goes into the medical field as our sister tutors drilled into us it is a vocation and one wishes to take care of the sick to the best of ones ability.sorry to be on a soapbox.
I agree but the old ideas of a vocation and a profession have been seriously eroded by oppressive bureaucracy. There are still some good doctors, although most of us contributing to this forum sadly haven't had the pleasure of consulting them.
Dubuffet thank you for your response .the wretched iPad has misspelled again can,t imagine why I go back and correct the problem and it just plows on it,s own way I am not really so indifferent to names it does it repeatedly.am not sure if it is because I am using a US sourced iPad as opposed to a GB one.it is an unexplained mystery.so hope you forgive me.
Not a problem. It does the same for me and I find it really irritating as you don't always notice in time. I have two lovely friends called Heather, which it always tries to correct to Heavier! Not the way to make friends and influence people!
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What I mean is that I thought I've not been given credibility and felt I'm being looked down on because of being a nurse, and not a doctor!!! 
My doctor told me injections less than 10 weeks apart can be dangerous!
Re testing all patients on b12 injections
