Neurological pernicious anemia?

[Abundant1s]

I have severe neurological symptoms and muscle atrophy. Cognitive issues. I have antiparietal cell antibodies and low copper iron and high b12. Normal MMA

Can i still have hidden b12 deficiency?

Desperate for answer symptoms like ms or als

[Nackapan]

I hope you are having a brain MRI.?Seen a neurologist?

Symptoms do overlap with many things.

Was an intrinsic antybody test done too?

Functional b12 deficiency ?

It's seems a cases of ruling things out unfortunately.

Make sure folate checked (often us with b12)

Vit D

Hope you get some answers and trestnent soon.

[Sleepybunny]

Hi,

I hope you find the answers and support you need.

I am not medically trained just someone who lived with unrecognised B12 deficiency for many years. I'm in UK.

Some links about B12 deficiency.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). UK treatment info in book is out of date.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films and videos about B12 deficiency

PAS conference 2019

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

Research/scientific articles that mention high B12 with symptom of B12 deficiency and functional B12 deficiency

These are aimed at researchers and health professionals, some words used may be unfamiliar and there may be some details that could be upsetting.

academic.oup.com/qjmed/arti...

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

nature.com/articles/ejcn201...

adc.bmj.com/content/104/Sup...

pubmed.ncbi.nlm.nih.gov/191...

sciencedirect.com/science/a...

shmabstracts.org/abstract/f...

Let me know if you're in UK as there are some UK documents about B12 deficiency I can post links to.

Support in other countries

b12deficiency.info/very-use...

I had to become my own detective to find out what was wrong with me as sadly knowledge about B12 deficiency can be lacking in some health professionals.

If you're not in UK, it may be helpful to put which country you are in in the title of your threads as this will hopefully attract attention from other forum members in your country.

Have you seen a neurologist?

Had any screening tests for auto immune conditions eg PA, Coeliac disease, Lupus, Hughes syndrome (Antiphospholipid Syndrome)?

If you have gut issues, have you seen a gastro enterologist?

They should be able to spot signs of gut damage that could lead to absorption issues in gut eg PA, Coeliac, Crohn's disease and others.

Have you seen a haematologist to ask about high B12 levels?

Are you or have you recently been taking B12 supplements as this may lead to high levels in some people.

Do you have results for Full Blood Count (also known as Complete Blood Count in US).

There can be useful clues on this as to whether B12, folate or iron deficiencies are likely.

The symptoms of B12 deficiency can overlap with those of other conditions eg Thyroid disease, Lyme disease, Lupus type conditions and others.

When I was trying to find out what was wrong with me, I tried to get my GPs to exclude other possibilities... a process of elimination.

Good luck

[Abundant1s in reply to Sleepybunny]

I’m in USI’m not getting help with my Drs.

[palmier]

Copper deficiency can give symptoms similar to b12 deficiency. How low is your copper?

"Copper deficiency is an increasingly reported but under-recognized cause of neurologic dysfunction. This potentially treatable disorder manifests clinically as a profound sensory ataxia and can be associated with signal-intensity change in the dorsal columns of the spinal cord, resembling B12 deficiency. "

ajnr.org/content/27/10/2112

[User2020-1]

It’s so difficult to maintain sanity when the neurological symptoms are so dominant - so sorry to hear you are struggling.

I felt compelled to reply as I also had the same thoughts when I was in early stages of PA diagnosis re: MS and ALS & I went to a neurologist for a thorough physical examination.

In a nutshell he discounted ALS straight away as you do not get sensory neurological issues with ALS (eg. Pins and needles, tingling and burning sensation); for MS one of the symptoms that is often prominent is Llermittes sign and that was not what I experienced.

Hoping this is of some use - I just wanted to share the insight I received regarding those conditions when I was in a state of uncertainty.

[thinkin]

Hi,

Certainly get help. Copper is needed for many functions including as a cofactor to important enzymes. Auto immune also a known cause for neurological problems. The most common reason to see a neurologist is a functional neurological disorder - the most common neurological problem no one has ever heard of and often misunderstood, even in the medical profession. DO keep pushing for answers.

[Bonjourtristesse]

What about gluten? Can also cause neuro issues and muscle weakness.

[lynxis]

Is your B12 high because you have been getting injections?

[aksundell]

I’m so sorry to hear you are suffering. If your doctors aren’t helpful, can you get a second opinion? I agree it is important to look at many possible causes. When I developed my neurological problems, I had a low normal B12 level and a high normal MMA and homocysteine. I have a strong family history of B12 deficiency and was treated for that. My MMA and homocysteine levels dropped into the mid range and many of my symptoms improved, others worsened, but now are mostly slowly improving. For the past 4 years I’ve seen many doctors who have looked for other causes, but found none. Some tell me B12 can improve other conditions and I may have something else going on. All I know is that I worsen dramatically without B12 treatment. It’s very unsatisfactory, not to have clear answers or resolution to medical problems, but that’s just the way it is sometimes with our limited understanding of the complexities of the human body.

Could your high B12 be from supplements you have been taking recently or is that your normal level?

If my case is to be believed, you can still have B12 neuropathy with a high normal MMA. You could certainly try treating with B12 to see if it decreases your MMA or improves your symptoms, but I wouldn’t give up on looking for other answers that make more sense. In the meantime, doing everything you can to support your nerves system preserve the function it has and possibly improve seems warranted. Plenty of sleep and rest, light excise such as walking, but only as much that doesn’t make you exhausted or feel worse, a low carb, nutrient dense diet high in omega-3’s. I also use red/infrared light therapy that seems to help my peripheral neuropathy and energy levels.

I wish you all the best

[PurpleBoy]

I am in a similar situation as you are-- neurological symptoms that seem similar to B12 deficiency, but extremely high serum 12 and low MMA. I haven't found the answer yet, but I hope one of us does soon.

I have recently read that there is a gene defect that can cause high serum B12 levels but low tissue levels. It is one of the variants of FUT2. The protein can absorb the B12 just fine, but can't release it in tissue, so it builds up in the bloodstream.