Little Update: Hello beautiful people I... - Pernicious Anaemi...

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Little Update

Sunshine1932 profile image
20 Replies

Hello beautiful people

I self inject and have since 2018.

My MRI is wonderful

Seen Neuro yesterday first time.

He wants to do electric conducts on my body but believes my pain and conditions come from B12 deficiency.

He is aware I get ONE jab every three months and didn't want to challenge it.

However he was very intrigued to know I'm part of a forum who self inject and that I too self inject 3 times a week.

Im sharing this because I think (my opinion) that we must stop being afraid to share that we self medicate with more of what we need. I honestly think being transparent will help them realise we need more and it will help us gain it over the counter.

Interestingly he said the UK does not operate their health system like other countries and the way he said it, it sounded like he believes we should. Example being Germany or Netherlands.

I have increased mine this week as my mental health took a nose dive due to stress and I'm back up to feeling level again.

I swear b12 is the miracle drug we are all searching for.

Much love to you all ❤️

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Sunshine1932 profile image
Sunshine1932
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20 Replies
Jillymo profile image
Jillymo

Your appointment sounds promising it looks as if you have found a neuro that has listened. The one I saw simply would not listen to my symptoms and didn't agree with myself injecting.

He requested a nerve conduction test and a cervical spine MRI of which I am still waiting the results. Before he had even carried out tests the swine labelled me with functional neurological disorder !

I am pleased to hear your experience was better than mine it shows there are some decent consultanta about.......it's just a case of finding them.

Nackapan profile image
Nackapan in reply toJillymo

I had a brain and cervical MRI.I thought it was whole spine but only upper.

Not sure why.

Hope yours is clear.

Mine was and gace me confidence for pysiotherapy .

Good to rule things out.

Jillymo profile image
Jillymo in reply toNackapan

The request for a cirvical spine confused me too as I a have scoliosis of the lower ! It will be interesting to see what results come back as I also have issues with my neck.

Unfortunately my brain scans show lesions and wide spread small vessel changes but this is to do with my antiphospholipid syndrome ( sticky blood ). Looking back over the years I wonder if it were my low B12 that was the cause of my heart failure but nobody seems to join all the dots and give me answer's. Its much easier for them to fob patients off with a diagnosis of FND.

I have waited months to be seen in gastrology even though my hematologist has tried to chase the appointment up. SI has been the way forward for me thanks to this forum and other's advice.

So a big thank you to you all. 😘

Nackapan profile image
Nackapan in reply toJillymo

When I say okay.It did have white lesions. T2 flares .

Sone possible cerrabella inflammation.

Told no brain Mri ag 'my age ' would be clear.

Nothing 'sinister' seen

Was the very comment.

Inflammation had reduced on second one a year later.

Yes I was interested to see result for neck and ears after vertigo abd ongoing vestibular disturbance

Hope you get at least explanations

Hate generic labels/ syndromes .

My daughter has had fibromyalgia and Me / chronic fatigue removed from her notes .

These were symptons that stopped them looking without extreme pressure persuasion from me mostly.

Technoid profile image
Technoid in reply toJillymo

It's a possibility Jillymo.

"Macrocytosis associated with vitamin B12 deficiency is also associated with fatal and non-fatal coronary disease, myocardial infarction, stroke, and other circulatory health problems. "

from pubmed.ncbi.nlm.nih.gov/259...

Jillymo profile image
Jillymo in reply toTechnoid

The trouble is I have had TIAs and a stroke but with my sticky blood condition it is hard to determin what is caused by what - so the easy answer was to label me with FND ! I am under cardiology for a slightly enlarged aort but instead of the 6 monthly check ups due to the backlog of patients these have now become yearly.

Just the thought of going to another consultation fills me with dread. Very few prove to be benificial these days and as for my Drs surgery I find myself avoiding ringing them even when in a crisis. You can spend ages on the phone to be told Drs not in or ring back tomorrow because all appointments have gone. 🤬

I will read your link with interest. 💐

Technoid profile image
Technoid in reply toJillymo

Mmm. got it, not straighforward to untangle those for sure.

Sunshine1932 profile image
Sunshine1932 in reply toJillymo

Oh bless you.

I'm done fighting with them all. For me the solution is B12 so as long as I can buy it then I'm not going to worry anymore if they listen to me or not.

Thanks for sharing and I love our support ❤️

Sleepybunny profile image
Sleepybunny in reply toJillymo

"the swine labelled me with functional neurological disorder !"

Have you applied to insert a note in your medical records saying you disagree with this diagnosis?

transform.england.nhs.uk/in...

Jillymo profile image
Jillymo in reply toSleepybunny

Yes indeed I have but at the present still at the ombudsman stage.

I am still waiting the results of the cirvical spine MRI which I know will be abnormal due to long standing issues. I have also contacted the FND support who are eager to veiw all results. I have said it before and will say it again - I no more have FND than a boil on my bum.

Sleepybunny profile image
Sleepybunny in reply toJillymo

"I no more have FND than a boil on my bum."

Snap!

I was too exhausted and traumatised to fight my FND, psychosomatic, MUPS, hypochondria etc labels.

I figure I get my revenge quietly on this forum giving people the information to fight ignorance.

Wondered if anyone from this forum has put a message on FND forum on HU about getting B12 checked.

Apologies to  Sunshine1932 for hijacking your thread.

Sunshine1932 profile image
Sunshine1932 in reply toSleepybunny

What is that diagnosis? I have autism and bipolar. Anything to do with them?

Sleepybunny profile image
Sleepybunny in reply toSunshine1932

FND stands for Functional Neurological Disorder

nhsinform.scot/illnesses-an...

MUPS stands for Medically Unexplained Symptoms

nhs.uk/conditions/medically...

Sunshine1932 profile image
Sunshine1932 in reply toSleepybunny

Oh gosh, imagine being told that after living with so much pain and symptoms.

Jillymo profile image
Jillymo in reply toSunshine1932

Look it up......it's a label they stick on people when they cant find answer's for symptoms. There is a FND forum on here which you can veiw by clicking on my hub at the top of the page.

I call it a way of writing patients off to save money and not carry out anymore tests.

Jillymo profile image
Jillymo in reply toSleepybunny

Nothing quite about me as enough is enough and this is nothing other than gaslighting of patients. Such labelling of a patient like myself with multiple autoimmune conditions could put my life at risk if a health crisis was simply passed off as FND.

I cant even bring myself to use the term ignorance it is nothing other than corruption. 🤬

Nackapan profile image
Nackapan

Thank you for your update.We are in the same timeftsne.

So far I've managed to keep a 2 weekly prescription.

Not easy.

However 2 out of 4 neurologists 'allowed' them.

I agreewith transparency.

Difficult though as sone have had all b12 treatment withdrawn as a consequence .

Perhaps the survey of how often forum members need to inject coukd get out there to educate a bigger audience.

PAS I'm sure ate working g hard on awareness .

During covid more exposed but more restrictions.

The 'guidance ' in the use of b12 tablets instead a real set back.

Not enough 'papers' proving thus.

More than enough 'subjects' suffering with living proof thd majority cannot use the tablets in their body.

Obviously if dietary tablets work 🙄

Amazed you not even getting 2 monthly.

Also a neurologist not willing to write to the gp when you are proof the b1e injections ate working.

I'm still asked what other medications am I on.

Still told alot of my symptoms are psychological.

Even though 'they' have my medical history.

One exasperated Gp. ( chosen one!) After declining yet more choices of an antidepressants simply said

Oh you will get yourself better .

She has helped keep my b12 prescription so far .

On nothing else to muddy the waters at present .

Glad to hear your regime giving results.

Take care.

Sunshine1932 profile image
Sunshine1932 in reply toNackapan

My consultant cannot see any Neuro damage other than the words out of my mouth as MRI and his MOT was all normal. Last thing to offer is the electric conduct or whatever its called. If its clear he said yes its B12 probably. When it comes to thar then I shall push for more than every 3 months but if he says no I will show him that this forum has 30,000 people fighting for the same thing.

Our voices will be heard but for the time being I'm grateful I can get mine from Germany.

Much love ❤️

Pickle500 profile image
Pickle500

Great to hear. Sounds like a nice, open-minded young Neurologist. And I agree, how else will the medical community/world understand the challenges of B12 deficiency and PA if we hide it from them?

There will always be resistance to start off. I was challenged on where I get the injections - they didn't care about my wellbeing, only where I got hold of the injections....i.e. am I involved in some sort of illegal drug cartel !! 😅

They don't know that we can easily get import it.

But perhaps awareness is increasing since rates of deficiency are on the rise. Processed foods, stressful lives, low meat intake, whippet misuse and even Covid are all making medics more aware of the challenges because more people are becoming deficient.

And they're quite right - why can't we be like more progressive countries. Even Canada and Australia sell it OTC - commonwealth countries. The UK should be leading the way on healthcare, not being led. OTC would simply make everyone's lives much easier.

Sunshine1932 profile image
Sunshine1932 in reply toPickle500

Hear every word you are saying. Just waiting for my needles to arrive so I can top up hahaha.

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