Atypical Pernicious Anaemia

[Sleepybunny]

Hi All,

If you have any spare time...I found some interesting articles when I searched online for "atypical pernicious anaemia".

[B12life]

Ah! will totally look into this.

[Jillymo]

Thank you for posting about Atypical anemia which is another interesting read for others who havn't come across it.......... proceedings.med.ucla.edu/wp...

What is atypical pernicious anemia?.............

Pernicious anemia less commonly presents with neurological symptoms such as paresthesia, unsteady gait, clumsiness, spasticity. 4 Demyelination of white matter in the brain and spinal column leads to peripheral neuropathy, ataxia, bulbar dysfunction, and dementia.

Mine is definitely PA, I have the white matter changes showing on my brain scans and have had a very unsteady gait for many years.

Your information is so helpful to others. 😘 💐

[Sleepybunny in reply to Jillymo]

I found papers and cases going back to 1950s about unusual presentations of PA and some more recent ones, from 2022 and 2023.

I think some of us struggle for years to get a PA or B12D diagnosis as our symptoms don't conform to the pattern of symptoms doctors expect.

I still think many GPs in UK dismiss PA as a possibility when a patient does not have macrocytic anaemia (enlarged red blood cells).

Quote from NICE CKS Anaemia - B12 deficiency and Folate deficiency - Signs and Symptoms section.

"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."

cks.nice.org.uk/topics/anae...

[Jillymo in reply to Sleepybunny]

Is it through lack of knowledge or are we being treated with contempt and ignorance ? I think its because they dont get a hand out for prescribing B12 or vitamins. Where as with statins or antidepressants they cant write the prescriptions quick enough.

I have lost count of how many times I have been offered statins yet my cholesteral isn't even raised. 🤔

Now that is a very informative link thank you for posting. I shall be saving that on for future reference. 😘 💐

How I wish I had that link when I saw that awful neurologist. He was a real swine and dismissed all my symptoms. Grrrr 🤬

[Sleepybunny in reply to Jillymo]

I'd like to think it was lack of knowledge but I've had bad experiences and am deeply cynical.

[Jillymo in reply to Sleepybunny]

Me too.

[Retteacher]

On the usual problem of doctors being confused and not listening to patients, we now have another reference paper to show them from the BMJ. This was only published 3 days ago and talks a lot about how the tests and markers don't relate to our symptoms with treatment for neurological symptoms having to be prolonged etc.

It is called 'Therapeutics Vitamin B12' by B. HR Wolffenbuttel et al. BMJ 2023 383 e071725

Martyn Hooper had some input on this. It shows what a mess it all is. Even the new markers being used like MMA can be misleading and therefore unhelpful. Send it to the Neurologist for their information.

[Sleepybunny in reply to Retteacher]

He's one of the authors of a paper I often suggest forum members could pass to GPs.

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Have you seen the rapid responses to the article you mentioned?

BMJ Vitamin B12 article

Vitamin B12

BMJ 2023;383:e071725

bmj.com/content/383/bmj-202...

Rapid responses

bmj.com/content/383/bmj-202...

I'm going to put these up as a new thread if it hasn't already been done.

[Retteacher]

I can only see one rapid response from a GP, who talks of patients who require frequent intramuscular injections as having a 'syndrome'. Where is the literature to support their belief in a syndrome? This is an example of the GPs who take years if at all to diagnose patients with a B12 deficiency and then say I told you so when those same patients fail to respond fully to the injections because of their permanent nerve damage.

[Sleepybunny in reply to Retteacher]

I think more rapid responses will be added over next few weeks so worth checking every week or so.

I'd be interested to see if the doctor who wrote a recent Pulse Today article about overdiagnosis of B12 deficiency responds to the BMJ article.

pulsetoday.co.uk/clinical-f...

[Cherylclaire Forum Support in reply to Sleepybunny]

GP comments after this article are very disheartening.

[Retteacher]

My husband has a criticism of the BMJ paper. He thinks they should have included in the first paragraph the beneficial effects in humans of B-vitamin treatment of Alzheimer's disease related gray matter atrophy. Subjects with modestly raised plasma total homocysteine experience a beneficial effect of B-vitamin treatment (including B12) on cognitive decline. This may only work on patients that have mild cognitive decline before the damage gets too great, but in the USA this at risk of dementia select group was estimated to be approximately 30% of those over 60 yrs of age or 17million people. He cannot understand why further B-vitamin supplementation trials have not been carried out on this subset of elderly subjects to see if progression to dementia can be prevented. Why do so many clinicians in public health recoil with horror at the mere mention of B12 vitamin treatment?