Pernicious Anaemia Society
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My story PA

When i was young 3-5 i had ear infections constantly. So i was put onto antibiotics all the time. By age 5 i hit my elbow and had my very first fainting spell that turned into muscle convulsions.

When i started school i also had my eyes checked and was diagnosised as dyslexic. My teachers made me read with colored paper (green/yellow) over all my school books.

When i started middle school (12 years old or so) my eyes were rechecked and i needed glasses to see. By this time my ear infections were now sinnistus all of the time so more antibiotics.

By the time i was 15 i developed chronic constipation and fainted on the loo. Then i started having upper respiratory infections instead of sinnusitis.

I missed so much school i was taken out of school. By the time i turned 17 i developed insomnia and severe irritable mood swings. The neuro said my sleep study was fine and i was put on antidepressants.

When i turned 18 i started to develop breathless spells. I saw a gp about this and was told i had anxiety and was put on different antidepressants.

By age 21 i developed eye floaters in my ldfy eye and was told they were due to aging.

By age 22 i started to have irregular bleeding and severe pain and cyst

At age 23 i had my daughter and developed post traumatic stress and was put in jail for a psychotic episode.

At age 23 i developed gastritis and lost 20lb in a month before my gp sent me to a GI specialist. The GI specialist said i also had ibs-c after a colonscopy and put me on senna.

Age 23: i was having severe breathing issues to the point i could not feel my face. I was sent to a therapist to learn how to breath correctly then put on nerve pills.

Age 24: i saw another gp about my breathing and was put on antidepressants i was told i was anxious and fidgetty.

At age 25 i lost feeling in my entire body one evening and could not move. I was helped to the ER and was told my tsh was fine all my test were fine. My chest xray and ekg were fine and sent home.

A few days later i went to another hospital because i couldnt feel my face and hands And it had been a week. I was told after a ct of my brain it was possible perpherial neuropathy. And was also asked by a nurse if i was worried Or anxious. I said well no sh*t i can't feel my face.

Finally saw my Gp the next week he noticed i had hand tremors to this my husband said I'd had them since i was 16. No one had ever told me that i shook. I brought it up to my mother and she said coworkers of mine had also commented on it! I was also told i have a gait.My gp sent me for a brain mri which ended up normal. With my symptom's i had my b12 checked and my level was 197.

My neurologist even said to me he didn't understand why i was so tired. ( i could have slapped him). I was diagnosised with b12 anaemia in March of 2016. I am currently 25 years old.

My symptoms

Tinnitus/breathless/chest pain/shoulder blade pain/vertigo/gait/sensitivity to light/ear pain/numbness in hands/feet/face, electric shock from knees down,hand tremors, joint pain, fatigue,confusion, paranoid, mood swings, restless legs, muscle spasms, muscle twitches, eye floaters, urine incontinence, constant yawning, blood shot eyes,dry mouth,headaches,nausea, breast bone pain, hip pain, eye pressure, hot flashes, full body fever feeling, feeling faint,fainting, sensation of irregular heartbeat,loss of balance,heavy legs,

8 Replies

So sorry to hear about what you have gone through. I hope you are getting the treatment you need

Martyn Hooper of the PAS may be interested in hearing your story. Lifetime membership costs £20. The PAS can point people to useful information.

pernicious-anaemia-society.... 01656 769 717

Office open every day except Sundays, from 8am till 2pm.

There may be posts on his blog that are relevant to you.

Other B12 websites

B12 books

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

Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart


I am part of pas but havent sent in my story


That is something of a journey. I hope you are finally getting the treatment that you need and that things get better for you soon. You will find lots of helpful info on this forum and kind people who can give you help and advice. Very best wishes.


I am so sorry and upset for you that you've had such a struggle and it's taken so long to get a diagnosis....

The main thing to concentrate on now is getting enough B12 quickly as you already have neurological symptoms. You probably already know that adequate treatment as defined by the BNF 'until no further improvement' with injections and supplements from the outset is essential but many doctors fail to realise the importance of this:

"The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."

I really hope everything starts to goes well for you now. Very best wishes.

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I did 18 days of loading. I stopped 8 dayd to have my potassium checked now im doing every other day. I no longer have issues going to the bathroom (still having to use suppositories some sorry tmi) but besides that im fine which amazes me because ive struggled for years. My headached are better. I still have issues walking and breathing though :/

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Info in Management section in this link I think is based on BNF (British national formulary) Chapter 9 Section 1.2

Have you read the following UK documents?



3)Google "BCSH Cobalamin and Folate guidelines"

These UK guidelines came out in 2014. Its possible that some GPs are not aware of them. I read the whole document and then gave a copy to my GPs along with a copy of Martyn Hooper's latest book.

Fbirder has compiled a useful summary of mainly UK B12 documents. If you pm him or search for his posts I'm sure you will find a link. i plan to give acopy of fbirder's summary to my Gps next appt.

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All I can say is you poor lamb.Take notice of the posts on this site and know that we are all behind for the bleeding after shots I would think you have not gone deep enough.Just massage the area and affix a firm swab over it(sterile)if possible.

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Ok thanks it only happened a few times. We are all in this together. Seems like only we understand the suffering this can cause.


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