Understanding Myself is the 1st step to helping my Doctors help me.

[Jninearty]

I have Ehlers Danlos,Gastroparisis, and Glaucoma. I deal with numbness in feet legs and my hands. Double Vision, with my vision fluctuations through out the day. Eyes that move from side to side, and up and down. Spastic stomach and Esophagus( nut cracker). Also hair loss and I am Chemical sensitive. The numbness in my feet and legs started about 15 years ago, but no Doctor until now thought to look at my B12. The only reason she did was because It was getting worse and I was insisting there was A pinched nerve. After finally getting an MRI, and a second no pinched nerve, Doc said let's look deeper. Blood draw shows low B12, low D. and High cholesterol . I have been looking at B12 issues and ended up here. I will see the Doctor this Thursday and have alot to say. I really want to know about Pernicious Anaemia. I feel I fit it's description To a tee. I have so much in my head I'm afraid I will miss somethings.I found that the subtitle on this sight for "The difference between B12 deficiency and pernicious Anaemia " stops short of it's title. Though it tells the causes of B12 defiency, it does not say what the difference actually is. What is the right place to start with shots and how do I figure out how much "I" need ? Talking with the Doctor with some education helps. P.S. I get nerve pain when I start urination , I still feel this is a pinched nerve, but am willing to explore other possibilities if they make sense.

[Gambit62 Administrator]

not sure what the bit about "The difference between B12 deficiency and Pernicious Anaemia' is about in your post above.

PA is an auto-immune condition that attacks the mechanisms in your gut that allow you to absorb B12 from your food, As a result it leads to B12 deficiency which is where symptoms come from.

There are a number of other conditions that can cause problems absorbing B12 and will also lead to a deficiency including h pylori infection, SiBO, low stomach acidity (which is also a result of PA but can be caused by other things), various drug interactions.

B12 is used in cells for a wide range of processes including production of new red blood cells (which is how it causes anaemia), the processes that release energy, the processes that recycle neurotransmitters, the processes that recycle homocysteine and MMA (which can cause cardiovascular problems if they build up), the processes that maintain the lining around nerve cells.

Because B12 is used at the cell level things can go wrong at any of the following steps a) absorbing it from your food, b) transferring it from blood to cells (which can be a side-effect of raised B12 levels) c) genetic factors that affect how efficiently your cells can use B12 in particular steps of key processes.

c) is quite rare.

The problem with urination sounds like you may have a UTI. The immune system needs B12 to run properly so being prone to infections is a sing of B12 deficiency.

[Jninearty in reply to Gambit62]

Yeah not a UTI ! Shooting pain down the inside of legs to the soles of my feet ! The bit about the difference , I get the part about B12 but what is the difference between that and the Anaemia?

[Gambit62 Administrator in reply to Jninearty]

if you mean why is pernicious anaemia called pernicious anaemia its an historical misnomer from long before B12 was discovered - when it was first observed as a type of anaemia which lead to madness and death. reality is that it wasn't the anaemia that causes madness and death it was the B12 deficiency that caused the anaemia, madness etc

B12 is involved in the process that creates red blood cells - if your body doesn't have enough B12 (or folate) the red blood cells become larger and rounder.

[Sleepybunny]

Hi,

Some links about B12 deficiency and PA. Some info in these links may be specific to UK.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around the world.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (USA website)

b12awareness.org/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Neurological Consequences of B12 Deficiency including PA

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, avialble to PAS members only.

pernicious-anaemia-society....

If you're in UK, I'd suggest reading documents below.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

More B12 info in the pinned posts on this forum.

I am not medically trained.

[Jninearty]

Yeah, not a UTI ! Shooting pain down the inside of both legs to the soles of both feet ! The bit about the difference, I get the part about B12 but what's the difference between the Anaemia and the diffeciency ?

[Katherine1234]

Jninearty I had pelvic floor spasms and pain (which I think that is what you are describing) especially the travelling down the nerves of my legs. This resolved for me (not saying same for you) when I got my B12 up to over a 1000. I am always amazed, there are the normal B12 symptoms and there are then the really weird symptoms that are unique and different to every individual. Also if you have high cholesterol if it was me I would get my thyroid looked into. Once my TSH started to come down so did my cholesterol. B12 and thyroid can run hand in hand especially with EDS.