Are these common symptoms?: So I have... - Pernicious Anaemi...

Pernicious Anaemia Society

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Are these common symptoms?

Greenkids profile image
8 Replies

So I have been sick since May. I was just diagnosed with PA. My symptoms are pins and needles in arms legs, chest, face. Rapid heartrate out of blue, shaky, very weak and tired, body aches, lightheaded sometimes, loss of appetite some. Ive lost at least 10 lbs. The sy.ptoms come and go. I may feel functional for couple days then horrible for weeks. Is all these symptims common with PA and can they just come and go?

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Greenkids profile image
Greenkids
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8 Replies
pitney profile image
pitney

PA brings with it lots of symptoms for some people and less for others , you might like to consider joining the Pernicious Anaemia Society and also have a look at their website there is lots of info on it that may be of help including symptoms to look out for, I also found the books Could It Be B12 by Sally Pacholok and What you need to Know about Pernicious Anaemia & B12 Deficiency by Martyn Hooper very useful when I was first diagnosed.Good luck and all best wishes

😀

Greenkids profile image
Greenkids in reply topitney

Thank you for the book suggestions as I will definitely look into those as well as joining Pernicious anemia society

Nackapan profile image
Nackapan

Yes it is a rollercoaster. With the right treatment and with time i hope will mske big improvements and maintain them.

Just stay quiet and patient for the healing to happen.

Greenkids profile image
Greenkids in reply toNackapan

Thank you!

pitney profile image
pitney

You are very welcome hope you start to feel some improvement soon

lynxis profile image
lynxis

Yes, these are common. Luckily you got a diagnosis much sooner than many of us, so hopefully you will recover sooner and more completely. Did you get loading doses? How frequently are you getting injections?

Greenkids profile image
Greenkids in reply tolynxis

So I have read alot of things and over a year ago I started having bad pain in the right side of my face. On my cheek and bridge of nose. I just read this could be signs of PA also so I may have had longer than knew but glad I was finally diagnosed. My Dr. is starting injections once weekly right now because my last checked levels two weeks ago were 400. In June when my level was 150 my Primary physician done shots three times a week for 4 weeks then stopped as at time was not diagnosed with PA.

Sleepybunny profile image
Sleepybunny

Hi,

Do you mine me asking which country you are in?

The reason I am asking is because patterns of treatment for B12 deficiency can vary between countries and type of B12 used in treatment may vary.

PA (Pernicious Anaemia) is an auto immune disease that can lead to B12 deficiency.

Some doctors may use the term Pernicious Anaemia when they actually mean B12 deficiency.

I'm in UK so some links I post may not be relevant if you're not in UK.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Symptoms of B12 Deficiency

pernicious-anaemia-society....

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....

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

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...

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).

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

Very comprehensive with lots of case studies.

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 that health professionals may have.

I am not medically trained.

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