Is this plausible?: I have been... - Pernicious Anaemi...

Pernicious Anaemia Society

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Is this plausible?

arron1212 profile image
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I have been slightly iron deficient anemic all my life. Recently i have got sick with a chest infection and was bed bound for about a week. However, after i started feeling dizzy, when walking. i experienced vertigo, worse than normal vision, and strange sensation up my spine. I developed difficulty walking because of the lack of feedback on one side. At the point my bowels pretty much packed up and stopped working with nausia on eating and pain. After about 2 weeks of these symptoms i sta®ted to get other symptoms. My hands and feet would start getting pins and needles after the slightest pressure. A lot of muscle twitching and spasms, along with general fatigue and brain fog. I went to my doctor and recieved a deficient B12 reading of 189. with a lower than normal red blood cell count of 4.4. I have a lot of left sided abdominal pain and wander.

Could I have pernicious anemia? i mean does it make sense? Because if not the next check after that is MS which i am very anxious and scared of.

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Sleepybunny profile image
Sleepybunny

There are various blood tests in addition to the B12 serum test that can help to establish whether or not a patient has B12 deficiency and/or PA.

The IFA (Intrinsic Factor Antibody) test can help to diagnose PA but it is not always reliable. A person who has a negative result may still have PA.

MMA, Homocysteine and Active B12 can be useful but the results of these tests can be compromised if a patient is already taking B12 supplements.

Have you had a Full Blood Count (FBC) aka Complete Blood Count? There can be useful clues on a FBC test. High MCV and high MCH can indicate the possibility of a macrocytic anaemia which is sometimes found in PA.

Have you had recent tests for folate and ferritin?

Have you looked at lists of b12 deficiency/PA symptoms?

b12deficiency.info/signs-an...

pernicious-anaemia-society.... Symptoms list in this section

There's a comprehensive list of symptoms in Sally Pacholok's book "Could It Be B12".

Are you in the UK?

The PAS (Pernicious Anaemia Society) are helpful and sympathetic. You can leave a message for them and they will get back to you.

01656 769467

Books

Could It Be B12 by Sally Pacholok and JJ. Stuart

A very comprehensive book with lots of useful info.

Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

Living with Pernicious Anaemia by Martyn Hooper

What you need to know about Pernicious Anaemia and B12 Deficiency by Martyn Hooper

Martyn Hooper is the chair of the PAS.

Websites

martynhooper.com/

pernicious-anaemia-society....

b12deficiency.info/

b12awareness.org/

Other links

patient.info/doctor/pernici...

patient.info/doctor/macrocy...

patient.info/doctor/full-bl...

bmj.com/content/349/bmj.g5226

ukneqas-haematinics.org.uk/...

Google "BCSH Cobalamin and Folate Guidelines"

"I went to my doctor and recieved a deficient B12 reading of 189"

Has your doctor recommended any treatment?

I am not a medical professional, just a patient who has struggled to get a diagnosis and wants people to have the info they need to make their own decisions.

jay47 profile image
jay47 in reply to Sleepybunny

Well done Sleepybunny for above post. When I was newly diagnosed I could have done with something like this. It's taken me years to find all the stuff you listed...then I found this site.

Arron1212 ,read and educate yourself because, unfortunately, our gps are failing to appreciate how debilitating this condition can be. The more you can find out yourself, the better you cope with the challenges. You need to be well to effect change. Especially with this one. Btw, your b12 level of 189 should trigger further tests eg IF test to rule out malabsorption, and antibodies...and, certainly, treatment withb12.

Hope you find answers soon.

Vitamin b12`s job is to switch off cancer cells and help form complete blood cells . If you are deficient , which I would say a definite yes to judging by your symptoms , blood cells may be dying off more quickly than they should or may be too small and you will have a relative iron deficiency . Long term deficiency starts to alter DNA structure , eventually leading to your myelin composition being compromised and means you are heading for MS . Here`s my advice : - Sort out a supply of methylcobalamin active vitamin b12 and start taking it as soon as possible . There are some good products which come in the form of sublingual lozenge ( under the tongue ) . Get some lecithin granules ( choline ) from any good health food shop and sprinkle a little on your meals , buy yourself a jar of good quality black strap molasses which contains vitamin B6 , iron and other minerals but also contains something very useful , which is trimethylglycine , which binds to the body damaging homocysteine and helps the body to expel it . Beetroot also contains trimethylglycine . Eat some raw cabbage and raw kale or other folate rich vegetables every day . Throw in some omega three and some CoQ10 , which will help you absorb the good vits through your gut and will help to protect your heart . Good health

fbirder profile image
fbirder in reply to illnesswhatillness

Please stop posting false, scary, information.

Low B12 does not lead to MS - ncbi.nlm.nih.gov/pmc/articl... - and to suggest it does could really scare many of the people reading this forum.

B12's job is not to 'turn off cancer cells' - this is just more FUD.

B12 deficiency does not lead to smaller red cells. Indeed it can cause the complete opposite - Macrocytic Anaemia (which translates as 'large cell lack of blood).

Much of the rest is just woo-woo nonsense. But it's largely harmless nonsense.

Gambit62 profile image
Gambit62Administrator

The honest truth is

a) yes - could be B12

b) could also be MS

c) could actually be both

Studies have shown that MS sufferers can respond very well to B12, even where B12D doesn't seem to be a factor so there are probably links as B12 is important for maintaining the lining around nerve cells - degradation being a major factor in MS.

There are a number of sub-classifications of MS and although it is very scarey and there is a tendency to think the worst you may have a form that is easier to live with ... and there is support out there.

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