After more than a year of waiting for a follow up neurology appointment I was left shocked and nearly in tears because of being forced to prove my need for B12 and more recently calcium to stop my symptoms. I have to risk my life and subject myself to a possible electrolyte-metabolic-neurologic-blood clotting crisis with a 1 in 3 chance of survival to demonstrate the underlying disease processes because the original paperwork is not valid any longer (because they might have been false positive) and tests have to be rerun. The neurologist admitted being unaware of the role of calcium in the nervous system (despite being a researcher in brain disease as primary job) or b12 (slightly more understandable but still it’s involved in basic physiological processes).
I provided proof of physical changes demonstrating issues with my thyroid-parathyroid and even additional lymph nodes. I provided copies of previous tests demonstrating clinically low b12 with positive gpc following concussion from yet another blackout. My neurologist looked at me and said that they were unaware of the role calcium has in the nervous system. It’s a topic covered in A levels and first year undergraduate biology courses……….it forms a part of basic overview of nervous system anatomy and more generally biology because it is an electrolyte.
I think my right to receive treatment from an educated healthcare doctor has been violated. I also think my right to life is being broken by replacing PA with FND thereby paving the way to refusing B12 treatment. I couldn’t be angrier because of diagnosis change to FND and diverted to MH services even though physical proof symptoms resolving with B12. It’s something that puts my life at clear risk and since I am currently facing a 5 to 15% chance of cancer from the changes in my neck any hint of MH will mean *all medical issues* will be dismissed because the doctors are too tired to look beyond the known provable failures in the diagnosis processes.
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RoseFlowerDew
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Oh my goodness! I am beyond shocked and saddened for you!
Changing PA to FND is irresponsible and wrong. As you know risk of FPs is nearly zero except sometimes just after an injection, and even then the latest systems are resilient to that.
Are you a member of the PAS? They might be able to intervene on your behalf.
Yes I’m a member of PAS and have also used Tracey’s services but sadly my husband loses his job tomorrow. So I can’t have a private biopsy for multiple nodules in my neck (have to use NHS services which are slow and staffed by poorly informed-supervised doctors) or have an advocate for neurological issues.
I think I can honestly say after the experience with my father (see other posts on this board), my health and my husband’s job loss that I am having not such a good year but also sooooooo incredibly aware I am not alone.
There was one thing that gave me a little hope today….uncovering inappropriate responses to patients on SSRI’s in the latest Panorama episode. It has parallels in PA community of patients blamed as being blamed for addiction to B12, or having purely mental health issues rather than demonstrated physical ones, etc. I noticed in the ME community that the misuse of SSRIs is seen in the same light as the now infamous PACE trial. I suspect too sooner or later the Long Covid community.
Because of the seizures from calcium I was wondering why there’s no charity providing education about the role of electrolytes and essential nutrient deficiencies (and-or imbalances) that cross multiple diseases that are fairly easily treatable. The system is ineffective by pushing expensive medications or patients onto other NHS waiting lists for physical diseases just through not listening to patients.
A haematologist once asked me for the list of my B12 deficiency symptoms that I had brought to our first appointment - to copy for her records. She said that B12 was highly addictive. She told me that this was well-known in America, where it is called "having the reds". She added that B12 is both toxic and carcinogenic.
Well, where would you start with that ?
I asked her for evidence - a copy of current research on this subject or at least a link for me to look up for myself. I told her that, should any of this prove to be true, the information needs to be shared with the Pernicious Anaemia Society as soon as possible as a matter of urgency. She still managed to change the subject three times.
Strangely, I never saw her again and was passed on to a locum !
This sort of alarmist nonsense could be extremely upsetting to a desperate patient who has waited months for an appointment. It may well also get related to GPs asking for advice on treatment frequencies. I doubt there is any point trying to start a meaningful discussion with someone who is churning out this sort of stuff, but let's hope she read my list at least.
I also met a DNA consultant later, further along the line, who told me that "the sense of euphoria felt with self injecting B12 is well-known". Oh dear. Infuriated, I could have slapped him for that flippant comment, but instead told him off.
PS: Seven years now of frequent injections and I'm neither euphoric, addicted or dead. But I am much less symptomatic - a gradual improvement over this period which I am hoping will continue. There is more of me to reinstate.
To RoseFlowerDew : Never give up hope.
I spent years crying (during appointments, after appointments), waiting for more appointments, reading more research, and like you, was shocked by how little the majority of consultants knew about B12 deficiency and other issues. But there are some out there who do know, or at least know that they don't know.
Those who genuinely care will do the research and learn. After all, we did it - but with short-term memory problems and cognitive issues !
Thanks for sharing that it made me laugh. I can't say it has ever made me feel euphoric either! It's infuriating that they treat us like addicts and try to make us feel it's all in our minds. 🙄
It’s strange but I was just wondering if I should bite the bullet and inform Patient Safety. Still on the fence but I am so stressed out that I can’t pull my thoughts together to put an extremely clear message across about this, Thank you again for posting the link so everyone is aware.
If you are unhappy with the change in diagnosis, you are entitled to ask for a note to be inserted in your medical records saying that you disagree with the diagnosis of FND and giving your reasons why.
You have my greatest sympathy. It is not nearly as serious, but I had a similar incident recently regarding shocking treatment by NHS staff and process. I have PA, and have been diagnosed by both one of my GPs (although two others say I don't have it, just a deficiency in B12!) and a private consultant, who was great but expensive. Several months ago now I managed to persuade my GP to refer me to a specialist gastric doctor. I received a letter say if I had not heard by mid-June, then to contact the outpatients department. Unsurprisingly, perhaps, that was the last I heard. I contacted the department a few days after their deadline and was spoken to by the rudest receptionist imaginable. She blamed me for receiving the letter, and said that 'they cause us so much work, and patients shouldn't receive them' and she was trying to get them 'stopped'. She was highly dismissive, and eventually checked on the progress of my appointment. 'It's not urgent, it's in the system but it will be months before you get one, if you do,' she said.
After I made it clear that, no, that was not 'OK' she eased up a bit, but not much. I felt she attempted to bully me into accepting poor service, and belittled my condition. Like so many on here, I have really tricky symptoms - palpitations alongside another condition which leads to AF (which is potentially fatal), serious nausea, fatigue, mood swings, memory loss, a lot of pain. Since my private consultant put me on self injecting B12, at the cost of several hundred pounds including the consultation (still, it was OK, the coffee was free) my severe breathlessness has eased, and I have a bit more energy, but now I suddenly get exhausted, rather than it being a gradual process through the afternoon. NICE indicate for PA sufferers with neuro related conditions, B12 should be injected every other day, but of course, the GP is not interested in this. Too high a cost. Too much effort. Although, my consultant says it will be at least 6 months before I start to see an easing of my symptoms, possible this will take a year or even two. He also accepts that some of the conditions, such as memory loss and other neuro conditions, may be too late now to repair. He thinks I have had the condition for possibly more than a decade. In all my GP visits during this time, never was it picked up. It took my cardiologist to spot my over-prescription of gastric acid inhibitors as a potential cause, and trigger the tests which, hopefully, given time and (it seems) considerable expense, might put my life back on track.
So I totally sympathise with you. PA treatment is a scandal. The medical community in this country seems to consider it insignificant, which is an outrage.
I don't know your particular situation of course, but in my case it was not too late. Although the total numbness in my arms came overnight and I started injecting very soon after, I had other issues that had lingered longer:
- 6 years before starting injections: parasthesias - bugs crawling sensation in hair, legs, face .
- 8 years before starting injections: started choking on own saliva, or even just air, multiple times a week. Got aspiration pneumonia once because I choked on water, nearly happened many more times after that but I was more careful. Started dropping things all the time, breaking plates and cups.
-12 years before starting injections: severe memory loss (not remembering people's names, not recognizing faces). The mild memory loss started a few years prior to that.
- Even prior to that, I always had trouble retaining my memories over events. My relatives even used to make fun of me, saying why are my parents taking me on trips if I never remember them. That still pisses me off actually, now that I know why that was.
- Starting about 20 years prior: continuously exhausted, intolerance to "exercise" (any sort of movement really), trouble staying upright / always leaning on things . Always a bit "uncoordinated" and bumping into things. I won't go into the mental health side of things but that started about 30 years ago.
LOL sorry for the novel. I just want to say that with B12, miraculous things can happen. I have recovered from all of this and more, but it has taken 7 years of daily injections along with enough folate. So make sure you're getting enough B12 to treat symptoms, regardless of what others say.
FND is actually a severe b12 deficiency, my opinion not this forums. I know someone high up who was diagnosed with FND and for years been struggling was advised to take b12 and their life changed dramatically for the better.
I think it is very insightful that they labelled you with FND so they do not need to give you b12. For me this supports my belief that they are trying to stop people taking b12.
Obviously all my opinions and does not reflect the opinions of this forum.
OMG I am so sorry this is happening to you. I can only suggest that if you can, you should see a consultant privately. It’s becoming more difficult to obtain private appointments as so many people are being forced to follow this route.
I am now on five different waiting lists, one of which is for neurosurgery which should have taken place over a year ago. I’m finding I have less mobility every day. I hope you find the help you need.
Poor you. Stress dealing with ignorant doctors is not good for anyone. Especially people like us with B12D who have high anxiety levels.
You expect doctors to help you not the exact opposite. I hate to be the bearer of bad news but I think there is now a strong possibilty that your GP will stop your B12 injections.
Is it possible to self administer your calcium? If so I think you would be better off with DIY teatment like most of us on the forum.
With DIY treatment you can have a good quality of life and not have the hassle of dealing with doctors and their shocking lack of knowledge.
Thank you Charks, Although I understand your message, I have been looking after myself the very best I can to ensure I don’t overload A&E or other services when symptoms go out of hand. It’s happened before and I ended up not only in inexperienced hands but bad ones where even the nurses said to me the doctor was going to f**k me (their words and shockingly bad language).
I’m now in a position of it being necessary to be seen for definite physical changes. That and the fact that low calcium untreated can lead to seizures and heart issues which if not recognised beforehand will be mistreated in A&E (once again) which leads to significant consequences physically, economically and personally in many ways. DIY only goes so far. If I get anywhere near close to kicking the bucket I want to know I did everything possible to stand behind myself. Technically doctors once felt the same but I think their hands are tied by a bad system which I made clear in my report to the Patient Safety Commissioner.
It pains me to hear of your ongoing tough time and I know tough is an understatement.
It’s great you have done your report to the patient safety commissioner. Although it may not help you now, it will certainly help others who have the misfortune to walk in your footsteps.
I apologise but I do not know what FND is? I too am concerned that my diagnosis of autoimmune PA could be overturned as I test negative with the IFAB test yet I need to inject B12 every day. Even an hour later than normal I can feel my jaw and teeth becoming achey and my hands a bit shakeup so I dare not think what I would be like in less frequent injections.
Back to you, are you self-injecting B12 or having only what’s given to you? Regards calcium, is the calcium prescription only or by some process like IV or injection? Have you exercised your right to a second opinion? I have often done this and I always put the request in writing 🤗🤗🤗
It’s extra hard with hubby’s situation but I do know from experience that these dark times have silver linings. I know that’s hard to believe when you are in it. Take time out to sit outside if you can and just “be” clear your mind even if only for a few minutes. I too often feel overwhelmed with so much tough stuff going on and this helps me. I hope you find something that works for you.
Take one step at a time, it seems you are doing incredibly well under extremely difficult circumstances.
As ever, an NHS link, the source I trust the most, but why Scotland and not England, I don’t know. But Dr Google has more links under FND if you want to chase them.
My wife has gait ataxia, we think due to SACD after years of medical neglect following a diagnosis of PA, later rescinded on the spurious grounds that she was IFAB-ve.
But I see FND can cause ataxias, so we must be careful to look out for such a diagnosis. But I can’t see SI-ing B12 helping with FND like it manifestly does with PA, even if there it only keeps the worst at bay, and slows the decline 😢
I was diagnosed with FND (Functional Neurological Disorder) and similar diagnoses despite saying again and again I thought it was B12 deficiency.
Strange how virtually all of my neuro symptoms started to improve when I finally started B12 treatment.
Apologies to people who genuinely have FND but I feel FND is is a diagnosis sometimes given when doctors can't be bothered to exclude other possible diagnoses.
FND (Functional Neurological Disorder) is a genuine diagnosis but often one that is mishandled leaving patients with the impression they are being told it is all in their heads. It is actually a diagnosis that says something has gone wrong with the way your body is operating and responding to stimuli. One frequent characteristic is that focusing on things tends to make whatever is going wrong worse but distraction and allowing the 'subconscious' to run the show sees to make it better.
A parallel might be with functional B12 deficiency - where there isn't actually a lack of b12 in the body - often quite the opposite - but the bodies ability to use that B12 is impaired so at the cellular level processes run as if there is a B12 deficiency. In FND there isn't any damage to the nerves etc but there is something going wrong with the way they are working.
This is a video of quite a striking case of diagnosis and treatment through physiotherapy.
That is really appreciated and I will watch and learn. It sound like a very tricky area of medicine but I suppose chronic illnesses are by definition more involved than an injury like breaking a leg.
You do a great job on this forum by the way. Thank you for that too. 🤗🤗🤗
Thank you Gambit for raising cellular b12 deficiency.
I’m sorry though that I disagree with FND having read through some of the controversy around the diagnosis. It is in fact the new name for ‘conversion’ disorder or WW1 hysteria diagnosis.
To be very clear….it is also an incompatible diagnosis when physical diseases are present that have the possibility of causing neurological problems. When FND is used *instead of treating the physical disease* then it can cause disability and other forms of ‘poor outcomes’. It is that aspect that I have issue with.
As for my situation, a medical practitioner in this country who is unaware of first year medical training regarding calcium and electrolytes let alone its role in neurology (and filling a role as a neurologist) is a cause of concern to me, particularly when practicing under the assumption of specialist expertise. As I am aware of associates used in place of qualified GPs in communities (without informing patients of the situation) I do not put it past hospitals to follow suit with similarly crossed trained scientists being unfairly used to present as specialists when in fact they are secretaries to actual doctors who may or may not review your situation. I’m not being alarmist I am in fact angry regarding the safety aspect of all of this.
I am sorry to all who have very kindly responded where I sound aggressive and it’s true I need to sit outside and just be. Thankfully getting a break today and going out but I dread having to handle this when I return. I will stand my ground as best as I can but it shouldn’t be necessary when suffering health issues. What kind of healthcare forces neurological patients to argue medicine just to receive dignified treatment and care? In truth 30 years ago neurological issues from B12 would have received knowledgeable attention and associated care to restore function. The fact is not only is access to necessary treatment denied so to all the associated support including additional support in the community across a wide range of services.
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