I’m looking for help with a hospital neurologist who refuses to acknowledge physiological changes noted in reports, blood test results etc. and attempting to give an FND diagnosis before even the tests that were ordered by themselves have been conducted and reviewed. I’m sincerely scared to be in the hands of someone who refuses to acknowledge the evidence supplied by other NHS hospitals, doctors,test results etc. some of which are serious. I did finally have a nerve conduction study but am certain now that that a foregone conclusion has been reached and will be discharged even though I have requested a face to face appointment so I could ask questions. This is in addition to mri findings that were ordered and the results being ignored. I have written to PALs but they don’t respond. I don’t know what to do…… the stress is enormous.
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RoseFlowerDew
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Oh dear. It looks like you have the misfortune to have an incredibly arrogant neurologist who is totally ignorant about PA/B12D. Unfortunately this is quite common; many other forum members have had similar experiences.
You could ask for a second opinion. But the chances are you won’t get any better results. Sorry to be so negative but that’s the way things are at the moment.
In my opinion trying to get help from the medical profession isn’t worth the stress. You’re better off helping yourself – again like most members on this forum.
I assume you have low B12 levels. Have you tried any B12 supplemention?
Hello, I m sorry to hear of your experience, its very difficult. From the sound of it you are wasting your time on this neurologist who has already made up his mind. I can only suggest you go back to your gp, discuss the situation with this neurologist. If no help put in a formal complaint. Write to your M.P.
I hope someone has better ideas to help you. The majority of the medical personnel (I refuse to call them professional) do not recognise, diagnose or correctly treat. I self treat.
I’ve recently had a MRI for my spine and brain. I have high inflammation so was on steroid drip for 3 days. I’ve been encouraged by my neurologist to self inject b12 and to keep taking vitamin D and vitamin K2.
My gp is investigating the root cause and is going to give me peptides which are not available on the NHS
I have a long history of PA diagnosis, first 30?yrs ago by elderly haematologist stopped by ignorant GP. 😬Now self injecting for few yrs with knowledge of aware GP👏 I fund this. Have postural hypotension and a nerve problem with legs . Geriatric Consultant asked if I had nausea. I replied. I used to but not now since B12 jabs. In his letter back to GP ,on that statement, " don't know what she means by that".🥱🤐I am injecting every 3 days , but due to these other problems have symptoms very like PA have returned.
I was referred to a Neurologist, 6 mths ago ,but still have nother at least 1yr to wait.🤬🤬
Having got rid of all those horrid symptoms of PA I am getting a bit 'swearing at the cat'.
We are hear to support you. So, relax, take a deep breath and we can make a plan moving forward. Our illness and other illnesses can be challenging.
Like WiscGuy said you have quiet a lot of evidence to hand or you can obtain it. It is your job to collate it. Get it in order. These are facts, figures and statements. Type it up and take someone with you.
At whatever time on whatever date you had a blood test that showed P.A./vitamin B12 deficency.
On (date) you were commenced on hydroxycobalamin.
You received EOD loading doses as per the British National Formulary and your current treatment regime is (insert detail).
You were physically examined by Dr (whoever) at (clinic/GP surgery) on (date).
On (date) you had an MRI, if you know which doctor put by whom. The results showed (insert detail).
On (date) you had a nerve conduction test by again if you know by whom. It showed (insert).
On (date) Dr (name them) noted physiologically changes. They are x, y, z.
(Then take a breath, think that you are talking to this man as though he was your son or nephew).
‘I am unprepared to discuss my healthcare with a doctor that cannot take a proper medical history. Therefore, I feel it appropriate that you tell me your GMC reference number. I wish to relay my concerns. I feel that you are not practising safely. The Pernicious Anaemia Society offer free membership to health professionals. Thank you for your time. Have a good day.’
There’s plenty of references on how medical students learn the art of taking a medical history which is needed for effective decision making. That bit involves active listening, repeating things back to make sure the person has understood, questions, examinations, ordering appropriate tests, referrals and you keep trying to alleviate a person’s suffering. The clinician documents a Plan of Care.
As a midwife, when women who came in pushing, I’d get someone to quickly scan notes and give me a very succinct medical history. 😐
The absolute bhitch if a neurologist who signed me off her books told me with a look of concern (!) (when I mentioned my b12 issues being where active b12 can be low despite a "normal" reading)
" no, no, only in severe cases of certain recreational drug use..... and I'm sure that can't be you, unless you have something to tell me".
I mean ffs. I give up. I gave a polite but firm mouthful about media hype of nitros oxide and it being something doctors are now hiding behind. I knew she was already kicking me off as nerve tests were all "ok", I'm disgusted at now having fnd on my record, I fought it, but that was already my "6 months on" check up with her so that was that in her eyes. If I ever can't source my b12 from Germany I'm buggered, cos it's only that that helped slow and ease the severe numbness and Neuro issues I'd had for 2 years. Though I still have never been more exhausted. Did manage to get b12 back with my gp but only every 10 weeks, and the last sod who gave it gave me a lecture about they can't legally give it even one day earlier than in my records as "it's dangerous". Ffs....
(And while I'm here, am i right in saying I could start taking a daily folic acid tablet? As well as my every other day injections of b12? It will help and not interfere, yes? I've read it mentioned before on here but can't remember the dose etc.... I've ordered some b1 tablets too, im getting a bit desperate...)
Sincerely, thank you for posting replies. Narwhal10 really great practical advice. Valley16 not a thread killer just life getting in the way.
Update:
Had an eeg which predictably didn’t show anything since my seizures continue to stop while taking calcium and it turns out I have growing thyroid nodules. (NHS refuses to help with that as well)
NHS was going to fund day surgery for another issue but the hospital due to conduct it refused to because of APS…..which coincidentally also causes seizures. It’s interesting when private hospitals won’t touch you even with NHS funding and NHS so frequently trotting out ‘nothing wrong with you’.
The neurologist also discharged me despite me requesting a face to face consultation to discuss the early results and situation before the eeg. In response I was ignored for the most part and told me I should forward my concerns and tests to rheumatology and endocrinology. Even though they refused to refer me or even suggest to GPs to refer me to.
I have complained to PALs in July and also more recently for giving me a consultant who tries to give a diagnosis before tests are done and admitted that they didn’t know how seizures and calcium are connected. I told them I am entitled to educated personal or at least give the neurologist additional support to help with the calcium side of things. Never heard back.
So I am due for a new set of blood tests soon which I suspect also involves b12 at my clear protest to not test during treatment. Next battle will be PA related because neurological tests didn’t show anything wrong.
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