New to all of this Pernicious Anemia Confused about physical response?

[RisingOne]

I am new here and this is my first question ever in this group.

I have pernicious anemia due to GERD and much antacids, Protein Pump inhibitors, which have now wrecked my body and B12 levels.

I started injecting 1000 cc daily, (from Vitamin Quick Shop and Pernicious Anemia org.) for a week, than every other day, there was some improvement, now when I inject B12 from my ampules, I developed numbness, in my hands difficulty walking, general body pain, I seem to get worse!

My GP, although a fine Doctor, is not up on Pernicious Anemia to a great extent.

I have been injecting B12 since Nov. 8th, 2021, started daily and now once a week. (How long before improvements?)

I am so very frustrated, any help or suggestions to help my situation would be greatly appreciated!

What am I doing wrong?

I took antacids heavy for about 2 years, with no PA effects, now I have all the symptoms. I recently had a Homocysteine test, which results were good. I also understand one could have PA and test results be good.

Please help!

P.S. in the beginning of this Pernicious Anemia, journey, I took much mists, liquids, tablets, capsules, even strips, my thinking was to overload my body with B12, since all that I read said that you cannot take to much B12. Now, with joint, pain, numbness, stiffness in hand and legs, I am bewildered

Doctor has tested and ruled out other ailments, Leukemia, MS, etc. I am 67 and until the PA was in great health.

Once again thanking you in advance for all your help.

[Nackapan]

It takes time.Did yiu get a diagnosis of PA ?

I got worse before better.

This can happen to alot of people.

Depends how low you got at cell level. How many symptoms. How long before diagnosis or and or treatment of b12.

I'm over 3 years in and thankfully improvements still happening.

I also was in good health on no medications befire I finely collapsed.

Been brewing for nearly 3 years.

The menopause was my trigger

[RisingOne in reply to Nackapan]

Dear Nackapan,

Thank you so much for your prompt response! GOD. BLESS YOU SIR!❤️ After, months of deteriorating health, weak muscles, numbness cramping, and my Doctor giving me all sorts of tests that came back above average, or normal I prayed to God (I am a Christian). At my desk one day with tears in my eyes I heard audibly and clearly check vitamin B12, I didn’t know what to think.So, I took a deep dive into Pernicious anemia, to my amazement all the that I was suffering with were listed, everything! I came across the Pernicious Anemia Org, which was a God send! I took all my information to my Dr. for who was really impressed, he also agreed that PA, is what I was suffering from. He gave me a prescription for 1000ml of Cyanocobalamin and said inject 1ml every month.

I realized after more of my own research that Cyanocobalamin is not the best form PERNICIOUS ANEMIA ORG, recommended.

My Doctor did not have good knowledge of Pernicious Anemia.

I emailed Regev Elya, from the Pernicious Anemia Org, his help was priceless.

To make a very long story short as is said, I am currently injecting once a week 1Ml, subcutaneous.

Since Nov 8th.

Nickapan, your answer has really, really helped me!

I thank you with all my heart.

One, question, should I continue my once a week injection or once a month?, Regev, advised more does not help, patience does.

So my symptoms are in a sense part of my recovery?

Thanking you in advance for your help, patience and encouragement.

God bless you.

Sincerely,

Anthony Ford

[RisingOne in reply to Nackapan]

Sorry about name confusion. I apologize. When you mentioned menopause as trigger, I realized my error.

[Nackapan in reply to RisingOne]

No problem.If you feel weekly is helping you continue doing that and keep a log.

Under treating gives more problems.

Time Is needed to heal.

[Sleepybunny]

Hi,

I'm sure there'll be lots of support for you here.

Do you mind me asking which country you are in?

I'm asking as it might help people to post relevant info.

A few links to PA and B12 deficiency info ....

Difference between PA and B12 deficiency

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

A charity based in Wales, UK. Has some members not in UK.

pernicious-anaemia-society....

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

Membership of PAS is separate from membership of this forum.

There are PAS support groups in UK.

pernicious-anaemia-society....

The most recent PAS newsletter Spring 2022 mentioned a new support group in Chicago area, USA.

B12 Deficiency Info website

b12deficiency.info/

This link mentions some support groups in Europe.

b12deficiency.info/very-use...

Members on this forum have had mixed experiences with Facebook groups.

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 Institute - Netherlands has some useful info on causes and symptoms

b12-institute.nl/en/vitamin...

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).

BNF (UK) treatment info in above 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 PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

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'm in UK. If you're in UK, there's a lot more info I can post.

I am not medically trained.

[RisingOne in reply to Sleepybunny]

Thank you so much Sleepbunny for all your help and the links! GOD BLESS YOU AND YOURS.I am from the USA, and live in Texas.

Once again I thank you for all your help and patience.

[Hidden]

Sorry to read of your suffering, this can hit people really hard, one minute you are going around normal and then for no apparent reason your whole body feels drained.Have you had complete blood test for folic acid, iron vitamin D.

It will take time, some more than others unfortunately.

Are you still on PPI medication ?

One problem with PPI is they block acid in your stomach,

We all need acid to be able to digest food and absorb vitamins and minerals.

I was put on PPI and lasted less than a week, made my symptoms worse. It was then I discovered I was better introducing little acid before meals.

ORange or Apple juice, a few red grapes etc.

That was 15+years ago, and very rarely get problems now.

Wishing you well

[RisingOne in reply to Hidden]

Dear Sallyannl, Thank you so much for your help, I really appreciate it. I just had a compete blood work up by my Doctor, and all of my levels are in a good or normal range for my age. D levels, potassium, iron even the Homocysteine level.I longer take any PPI, meds! My diet has changed for the better.

I thank God, that I came upon this site, you guys are a true Blessing❤️🙏!

[Sleepybunny in reply to RisingOne]

"I just had a compete blood work up by my Doctor, and all of my levels are in a good or normal range for my age"

The best advice I ever got was to always check results for myself.

I am aware of forum members who were told everything was normal and then found abnormal and borderline results when they got a copy or access to their results.

Have you got recent results for folate?

The symptoms of folate deficiency can overlap with those of B12 deficiency.

Which iron tests did you have?

Iron Studies

labtestsonline.org.uk/tests...

Have you had any thyroid tests?

It's quite common for forum members to report thyroid issues as well as PA/B12 deficiency.

May be worth you putting any thyroid results on Thyroid UK forum on Health Unlocked.

[RisingOne in reply to Sleepybunny]

Hi Sleepybunny, I have to check again I know my Doctor, gave me a complete blood analysis, I have to re-read. Vit. D, potassium and other tests were given,

[RisingOne]

Thank you TRIME97, for the info. GOD BLESS YOU AND YOURS!

[Foggyme Administrator in reply to RisingOne]

RisingOne. I have deleted the link left for you by TRIME97. I would suggest that you do not access this website. Pointing members to gambling websites is not something that should happen in this forum. I have mailed this new member and asked them not to post this information again.

[RisingOne in reply to Foggyme]

Once again much appreciated!

[Foggyme Administrator in reply to RisingOne]

👍

[Foggyme Administrator]

RisingOne.

This is an open access public forum and posts here are also visible across other websites. I’ve therefore redacted your name to safeguard your personal identity (we advise all forum members to keep personal details private). 🙂

[RisingOne in reply to Foggyme]

Thank you, I am new to your site.

[Foggyme Administrator in reply to RisingOne]

No problem 🙂x

[Sleepybunny]

Hi,

Sally Pacholok, author of "Could it be B12?" book, has written some online articles about B12 deficiency which may be of interest.

I found a link to a talk she gave about B12 deficiency at a US conference.

antiageingconference.com/pp...

US link about B12 deficiency

nhlbi.nih.gov/health/anemia...

Wall Street Journal article about a woman with B12 deficiency

wsj.com/articles/vitamin-b-...

pernicious-anaemia-society....

[Midnight_Voice]

1000ccs is a litre, which is rather a lot to inject in one go 😛 I imagine you mean one cc, one millilitre?

[RisingOne in reply to Midnight_Voice]

Yes correct 1CC, thanks for the correction. New to all this.

[Wowo23]

So sry to read your post and all that you're going thru. You seem to be on top of your diagnosis and are taking care of yourself. It does take time. When I was first diagnosed, I was a mess. A few of the symptoms cleared right away, but has taken years for others. All cases and ppl are different. Don't worry about taking too much b12. There are no known dangers or toxicity. It's only when b12 I'd high naturally that sparks docs to search for other diseases.

Hope you feel better soon

[RisingOne in reply to Wowo23]

Thank you so much for your response! This site has been a God send! So much love and help❤️

[Sleepybunny]

Article from Chicago Tribune about a mother with B12 deficiency

chicagotribune.com/lifestyl...