Left in no mans land: Hello everyone. I... - Pernicious Anaemi...

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Left in no mans land

Beckburybelle
Beckburybelle

Hello everyone.

I came off the phone with my GP 20mins ago and had to wait to post as so angry.

I currently cant walk properly have numb fingers and toes and my speech is dreadful forgetting words. I have mini seizures too. I CFS and Functional neurological disorder and functional speech disorder diagnosed on my last admission to hospital. I believe strongly that these are B12 related.

This week I have new symptoms of ringing in my ears neck pain and a chronic headache.

I asked in the most polite way if I could increase my B12 injections to see if the neurological issues would subside.

His response was " well we would need to stand you up and get you to close your eyes see what your balance is like"

He quoted the normal loading dose and 1 injection every three months as they all do.

When I asked him to check his BNF which states anyone with neurological issues can have an injection every other day until symtoms are controlled, he said that would be down to a neurologist.

Now if the neurologist is sayings it's a primary care managed condition And the GP is saying it's a neurology descion where does that leave me as the patient who currently has severe neurological issues?

I will be taking matters into my own hands I was a nurse for 30 years I have always believed in the health service but the care I am recieving at the moment is appalling.

If I can prove that I can make significant headway by SI B12 more often I will take legal action. This I believe might be the only way to get things changed in B12 care.

RANT OVER.

49 Replies

Well really feel for you . I trust you know how to get your supplies for self-injections? Best wishes .

Sorry thus has happened to you. I was also very let down after working in the NHS for 36 years. Not as a nurse but working alongside as a Nursery Nurse band 4 . My medical friends some still in practice are appalled but still are also ignorant as not sufficient training with PA and b12 deficiency. .

Alot is assumed that out of the door and placed on 3 monthly b12 is the cure .

Not many go back because too ill to do so and hit brick walks.

So the ignorance remains as so many are forced to self treat

PAS are doing their bit but an awful long wat to go

I do not understand the reluctance to try more b12 injections when heavy drugs are prescribed so easily.

I've pushed so hard I'm then left doubting what I'm doing at times

I've always had faith in the NHS like you .

I had the same problem as you. Neurologist stating Gp to manage and prescribe and visa versa

I paid to see a neurologist in the end as although very ill was discharged by the nhs one who said it was dangerous having so many injections and I was addicted to b12 !!

I did not fight to see him again.!!

I hit upon a neurologist by chance that was b12 deficient himself.

He didnt think enough research to use b12 tablets at a high dose . He also couldnt cope with 3 monthly b12 injections.!!

He was on 5-6 weekly.

He wrote to Gp supporting to stay on 2 weekly b12 injections and to do some sc at home

Initially the sc at home rejected.

I bought some with the help on here.

Then the decision wad overturned .

It was all very distressing .

Especially when the neurologist thought /thinks a delay in my treatment is having ' consequences '

I wish you well in recovery and your 'fight' over essential treatment.

Rant away on here .

We all need the support

Thank you so much I am driving everyone crazy including myself x

That would be brilliant of course .But Ive no doubt that you will be up against the “powers that be “ .

Good for you it saves so much frustration in the long run.

I’m sorry you’re having to deal with this all. I worked as a unit clerk for almost 20 years. I always thought our healthcare system was great. I changed my mind quickly when I ended up on the other side as a patient. It’s eye opening, appalling and down right scary. I’m not sure where you are from but I’m in Ontario, Canada and I have to laugh when I here people say “free healthcare must be nice”. You get what you pay for. The number of people falling through the cracks over hear is so sad. I’m not even the only one dealing with it in my family. It’s beyond just the b12. I’m glad you are at least able to take things into your own hands. I wish you well!

So sorry to hear this. I was diagnosed in India where I lived for four years. It soon became apparent when I returned to the UK that there is much misunderstanding and closed mindedness surrounding B12 deficiency here. I was shocked and have self injected ever since. When my 27 yo daughter was diagnosed with ME/CFS (symptoms which sound very similar to yours) I was sure it was B12 related. She had to resort to paying for a private consultation after a year of struggling, slurred speech, forgetting words, unable to pass the test with eyes closed, paralysis down one side, unable to walk. The Bupa Dr insisted on an urgent Neuro appointment. The Neurologist at the John Radcliffe was amazing. He knew there and then that she was suffering from hemiplegic migraine but sent her for CT, MRI etc. anyway. She's on meds now and has her life back. Apparently a ME/CFS diagnosis is scarily common when in fact it's hemiplegic migraine. This has really scared me as her GP pretty much wrote her off as a hyperchondriac. I hope you get the help you need, especially as you're one of those who has given so much to the health service yourself.

Hi Karenhath, I just wanted to say thank you so much for sharing this. I too am diagnosed with hemiplegic migraine and have been through the ringer re neurologists, specialist nurses and MRI after MRI as my symptoms were so severe and completely debilitating. I was eventually diagnosed with PA and Coeliac 11 years ago , but with long standing irreversible nerve and cognitive damage.

At the time the neurologist and specialist nurse introduced a standard testing for PA, ferritin , Iron , Folic etc at the point of a patient being assessed with five presenting factors at initial assessment .This was amazing and agreed by the particular NHS trust at the time. Unfortunately, the Neurologist went off to pastures new, and the process has again been stopped by the NHS ?? it really saddens me, as if my PA would have been picked up when I was first presenting with the symptoms ,15 years previously , the neurologist is absolutely clear that the damage would have been significantly less and possibly repairable.

To my knowledge , from a fiend within the NHS, the cost of resuming this testing at the initial point of presenting with just 5 indicators at the initial neurological assessment , would be less than £5 ??? Is it me or is it an absolute no brainer ......

Sorry, I missed this. Sounds like a 'no brainer' I agree and I'm sure would help so many. I'm sorry you've been through so much. We can hope that the system you mentioned eventually becomes the gold standard and an awful illness which is so easily and cheaply treated is dealt with much more sympathetically than it currently is.

Thank you for your post @Beckburybelle like most people on PAS I too have had to take care into my own hands as made to feel I was l making up my symptoms and therefore had no right to even be having loading doses, when even like you I could hardly walk, speak or function. For me, it seems that NHS are missing an opportunity of making a massive difference to peoples lives here by consistently going down a clinical diagnosis only route, not taking heed of symptoms, working in silos and misdiagnosing - which inevitably costs trillions of pounds and causes alot of unecessary suffering. Something really needs to change - no-one in their right mind would impose PA or B12 deficiency symptoms on themselves ever.

I am in the same boat as you like many others. I have been a nurse for 32 years and thought the nhs was amazing until I realised they were all about treating symptoms and not about finding the source. They dish out pharmaceuticals like sweets which make you more ill then give you some more to counteract that one. I argued like hell with the Drs taking in printouts with the guidelines on only to be labelled a difficult patient. So I had no option but to source my own ampoules. I also found when I cut out gluten it made a massive improvement so play around with other things as well. But I’m afraid you will have to do the same as so many others and self treat. Good luck.

So sorry to hear about your lack of treatment.I find myself really angry on behalf of all of us. The NHS is marvellous or terrible depending on who you see on a given day. The good usually outweighs the bad but the attitude. Of so many GPS to B12 issues and PA reveals an appalling ignorance of their own guidelines as well as the amazing capacity to label patients as time wasting troublemakers or hypochondriacs rather than actually look through their records. I think there is a missing speciality for us to be referred to . GPS listen to consultants not patients.

Your frustration and anger resonates with the majority of us sadly. Members more qualified, knowledgable and with medical back grounds have been met with brick walls and I have to wonder what chance I have against the institution that’s the NHS.

I tried appealing to the people that are there to help and the dogged insistence and refusal to help staggered me. Although I didn’t realise it at the time, but after reading so many posts here I’ve come to the realisation that it’s almost a mantra that’s quoted when they shut up shop on us.

Just like that they stopped my monthly injections and refused to listen to reason or even listen to me at all! I’m sure I’ve been labelled a neurotic nuisance, hypochondriac etc whatever!

I now self inject and apart from aiding my health I also have an overwhelming sense of satisfaction knowing they aren’t in control, I am.

I wish you well and hope you get the help and strength you need x

Dicato
Dicato in reply to SallyRees

Well done you

Welcome to the dark side Beckburybelle. I think a lot of us give up fighting after being treated as crazy/stupid/hypochondriacs for so long.

Hi @Bonjourtristesse You forgot 'old.' A fourth one to add to your list.

I will state here I will stop at nothing to get a change for us all.

Most of us on this forum know exactly how you feel right now. It is so very frustrating to come up against the brick wall of medical intransigence and even if you do get a GP who will listen and even agree with you they are unable to help as they are constrained by the regulations and the licence conditions around the medication we so desperately need.

There are also the crazy notions some of the professionals have like the practice nurse who told me she only injects half a dose as you don’t need any more as it is a poison. She also declared that the PAS is a bunch of cranks.

Seeing a neurologist might not be a bad idea though. If my experience is anything to go by it probably won’t get you the high dose of B12 you hope for - she said there isn’t any mechanism by which it could do what I think it does. What did happen is she ordered some wider blood checks and an EMG study. The blood tests I could have done without as that just threw up a scary possibility which turned out to be something which needs monitoring by further six monthly checks, with blood letting. It was the EMG study which was so valuable as it showed the nerve damage was in sensory not motor nerves and there is probably carpal tunnel restrictions in my wrists and restrictions in my elbows which are causing most of the problems in my hands. NSAID and splits have really made a difference so at the moment I am leaving the suggestion of seeing the surgeons on the back burner.

There is, so I understand, a blanket instruction, maybe even a regulation that all injectable materials, including saline for injection dilution, are by prescription only. For us to be able to buy B12 for injection it would have to have an exemption. That would open the floodgates for a whole raft of narcotics to be produced as a Carmine tinted solution in little ampoules by the criminal gangs.

For us sufferers needing frequent injections of B12 leaving the EU could well be a real nuisance.

I am determined to campaign for change for variable dosing based on symtoms Better testing for diagnosis and medical training for professionals

SallyRees
SallyRees in reply to kcbrecks

How are beauty clinics/salons allowed to sell b12 injections? I’ve seen several online and my daughter in-law told me a salon near her offered them. They are extremely pricy but how do they dodge the restriction of prescription only?

You don't need a perscription for B12 injections if you purchase from abroad its a vitamin. I get very annoyed that just about anyone can give them I do worry about injection technique and long term tissue damage if people are not educated in good technique. It is a skill. The Nice guidelines and BNF licenced perscribing does not apply to private practice again a bit of a worry. But as patients who are not cared for or listened too to be well we have to SI or we continue to deteriorate. Until the Nice guidelines are changed and dosing is done on symtom control not on results nothing will change with NHS care of PA patients.

You can’t purchase them over the counter in the UK, not that I’m aware of anyway.

Nackapan
Nackapan in reply to SallyRees

No. They are prescription only. Not sure how the beauty salons get round that?

SallyRees
SallyRees in reply to Nackapan

Unless there are different strengths of B12? Dunno how they get round it 🤷🏻‍♀️Or charge the amount they do.

b12deficiency.info/blog/202...

Very interesting read I will most deffinately be writing to my MP

Yes. I wrote to our M.P

Reply was cursory

Not sure if even got past admin.

So wrote again!

Still awaiting a reply .

Gambit62
Gambit62Administrator in reply to Nackapan

B12 is a prescription only medicine. It can be supplied without prescription for non-medical - eg beauty reasons.

The NHS website NHS.uk under its listing for Hydroxococalamin section 1. About hydroxocobalamin has as its third item - Hydroxocobalamin is only available on prescription.

I found an outfit on the south coast who will send you an injection kit by post however they are headed by a qualified physician so perhaps she issues prescriptions for all of their clients. They are probably charging heavily for their services as it is a very fancy website and they don’t come cheap.

How the beauty industry manages it escapes me unless they have tame qualified prescription signers. I did find a reference to the import of injectable hydroxocobalamin on a UK Gov information site by that was for use on sheep.

I you are certain you don’t need a prescription the buy the B12 injections the perhaps you would be so kind as to furnish us all with details of your source. I like many others have been buying our stocks from German online pharmacies. As they are available without a doctors script in Germany and under the homologation of rules throughout the EU it meant that applied to UK purchasers too. Sadly we may be finding we have problems in this respect now we are reaping the benefits of casting the Continent adrift.

SallyRees
SallyRees in reply to kcbrecks

There seems to be many grey areas, maybe loop holes even. Such a tragedy it’s not available to those who need it most.

Frodo
Frodo in reply to kcbrecks

****** site is charging completely outrageous prices. Plus it's Methylcobalamin, which, as I understand it, isn't the best form for people with PA/B12 deficiency and can cause anxiety and other symptoms.

One of the things they offer it for is 'weight loss'. I think this association with getting B12 at a beauty clinic for 'energy' and 'weight loss' is not helping the cause of increased frequency of treatment medically. It does make a nonsense of saying it's not safe to have more, or to self-treat, when clinics like this are able to offer it to anyone. It's putting it on a par with getting your teeth whitened at the NHS dentist - not medically necessary.

Gambit62
Gambit62Administrator in reply to Frodo

to be clear - some people get on fine with methyl but for some it does cause problems with anxiety. Other forms of B12 can do the same but the incidence seems to be much lower.

Leils
Leils in reply to SallyRees

They have 1 doctor nationally to cover the prescription. At least the clinic I went to did. And as long as risks e.g low potassium were covered then they carried on.

kcbrecks
kcbrecks in reply to Leils

This has to be the way they must be doing it and they are really charging plenty for their services.

I had a terrible experience after pointing out guidelines to an obnoxious GP who tried to humiliate me and suggested if I wasn't happy to get another practice.She made me so upset I burst into tears.Only when I returned with my daughter in law who is a consultant did she then back down and give me the correct treatment.The practice nurse told me that the GPs hate her having to spend time giving B12 injections and moan about it all the time.I self inject now and have done for several years.Its a disgrace.

I bet your GP’s face was a picture when you returned with your daughter in-law. 🤭

she went from being horrible to being the perfect doctor(all an act) I couldnt believe her falseness when my daughter in law was present.

I bet she did! Couldn’t borrow your daughter in- law could I? 😜 Awful really when you think how they speak and treat us eh.

Haha she is useful.I really didn't want to involve her but I was so upset and taken aback.If you read my post from back when it happened you will see how bad I was treated.The GP also said Martin Hooper was stirring up trouble.

I’m speechless! Some of these GP’s think they’re god! 😠 I’m so sorry you’ve been treated this way. No one should be made to feel like this.

I’m just so thankful for this awesome community, I don’t know where I’d be if I hadn’t been helped and advised by so many lovely members here.

They really don’t like it when patients appear to know what they are talking about, there was a time when you wouldn’t dream of questioning a GP, as soon as you mention internet your doomed, I had the condution test that resulted in, it could be this, we thought it might be that,no clear reason why, since last Oct my symptoms have increased and now affecting my finger tips that feel numb and throb like I have just come in from the cold, and now my lips feel as though I have just come from the dentist after the injection is wearing off, this is besides the stiff tight numbness to my feet,constant diarrhoea breathlessness and feel unbalanced I could go on,your left feeling like some hypochondriac, hope this is a better year for us all.🤔

So sorry to hear you've had to join the " Disillusioned Club " with all the rest of us.I echo and agree with everything you and all the others are saying here.

It's disheartening to be treated so dismissively by health professionals when patients with other conditions are usually treated with more respect.

I have a lot of uncharacteristic bitterness when I remember that as a former nurse I can, hand on heart, state that I have never behaved towards any patient in the way we've all experienced.

Good luck with your endeavours & Best wishes x

Do not give up you are worth fighting for !!!!

My sympathy. That is exactly what happened to me, [neurological symptoms and GP's attitude.] I now self inject, when I need to.

I'm afraid you can "Take donkeys to water but you can't make them give you injections" as the old saying does not go!

Wow, that's a rip off. Much cheaper to buy from Germany. Can't believe they're charging £17 for 6 ampoules. Cost is approx £100 for 100 injections if you source your own supplies (including needles and syringes).

I wish you all the luck in the world 💪🏼

Everyone here is always keen to learn of good suppliers of our much needed fix. I have looked at the site you indicated and they are still looking at much more than we would expect to pay. We have been buying the ampoules for about 60 pence each in packs of 100 plus £9 or so for the courier giving a total injection cost of less than £1.

Personally I do not have a problem with supply as we have a very close relationship with a German family and regular visits are made between us and always will be. It will be a simple matter to have a pack delivered to them just before either they are coming here or we are going there. Although I still have seventy left from my last batch there is one who is itching to come stay with us and I know he will be on the first plane out as and when travel restrictions are lifted. He will definitely be bringing a pack with him. As things stand here though were I to offer them to you even as a gift then that would be in breech of 'Hydroxocobalamin is only available by doctors prescription'. Added to that is if you were offering to inject others do you have the relevant certificate to enable you to inject others? This was something which came up in a conversation I had with a retired GP friend when we were talking about volunteering to help with it. He still has his, despite no longer being on the BMA register.

When the government was asking for volunteers to assist with the Covid inoculation program my first thought was that there are loads of us, all over the country who are already doing IM injections regularly. I have done over three hundred without any problems following the simple procedure taught by the practice nurse. If you look at the requirements for volunteering it needs a training course and a certification. Perhaps you can get one by taking the course as your experience may give you entry qualification to the course.

At the moment I am in contact with a supplier in India. Their price for a 5ml bottle is just under $1. I am asking about 1ml ampoules.

Our problem, as I see it, is the medical profession. They have a dog in the manger and an Aunty knows best attitude to anything medical. Coupled with governments trying to contain the illegal narcotics trade they will naturally resist all attempts to bypass the regulations.

Beckburybelle Noticed this is made in Vietnam under Italian licence. The hydroxycobalamin also contains "natri chlorid, methly parahydroybenzonate, propyl parahydroybenzonate" (their spelling). Not sure what those are - don't think you usually get as many additives as that?

Great idea about starting a clinic. Maybe you'd have to set it up as a 'beauty' clinic?

A retired nurse round here set up an ear wax removal clinic as that's something that's largely been cut by the NHS. Charges far less than private doctors to do it (though still pricy).

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