Finally taken seriously: I was... - Pernicious Anaemi...

Pernicious Anaemia Society

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Finally taken seriously

outlander28 profile image
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I was diagnosed with PA many years ago, it was diagnosed over 30 years ago due to a mini stroke (TIA), put on daily B12 for 5 weeks then every 12 weeks. None of my symptoms went away, some abated a little but, never went away. Over the last 5/6 years things have got worse, however no GP would listen when I told them how I felt and told me I was depressed and put me on anti-depressants, things have got even worse now, as GP states my levels are fine. I finally looked up PA on-line and was shocked, I had every symptom, went back to my GP 3 weeks ago, she questioned if I had PA (did not read any notes) but, and a very big but, she referred me to Neurology, got to wait till next year but, at least someone is listening,

I am now getting absesses in my mouth a lot, fatigue is an understatement, I have had to give up driving due to pain, I have developed heart issues any many more symptoms, I often feel like my life is draining away (bit dramatic I know but, this is how it feels for me). Things feel they are getting worse not better, and now I have left work as it was too exhausting and painful.

Thanks for listening

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outlander28
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5 Replies
jade_s profile image
jade_s

Welcome to the forum. I'm really sorry to read this.

"life is draining away (bit dramatic I know"

No this is exactly how b12 deficiency makes you feel. Slowly you just get worse and worse until nothing is left.

Are you in the UK? It's helpful if you let us know what country you're in, because guidelines differ.

In the UK, neurological symptoms - like you describe - require every other day injections until symptoms resolve or 'stop improving'.

Here is a letter writing template, the especially point 1 b12deficiency.info/writing-...

If your doctor won't agree to increase, you can buy injectable b12 from reputable German pharmacies and do it yourself, like so many of us here do. We can help if you want to go that route.

I too had to stop working for 4 years and now only work parttime the last 3. B12 deficiency can be so easily treated yet ...

Stick around on the forum and you will find you are not alone.

Sleepybunny profile image
Sleepybunny

Hi Outlander28,

Welcome to the forum.

I'm assuming you're in UK so let me know if you're not.

I suggest putting queries about treatment in a letter to GP as I feel this is harder for GP to ignore.

What to do next if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

How to write letters to GP about B12 deficiency

b12deficiency.info/writing-...

Point 1 in link above is about under treatment of B12 deficiency with neuro symptoms.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate from membership of this forum.

pernicious-anaemia-society....

Have a look at the thread below where I left a detailed reply with lots of B12 info

healthunlocked.com/pasoc/po...

There's lots of other info I can pass on so just say if you want me to post more.

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

Charlie27612 profile image
Charlie27612

From what I've learned the last 18 months about PA is you rarely get the correct treatment on the nhs, I was diagnosed last year and now treat myself under the care of a private dr. He thinks I have had PA for many years undiagnosed and like you I felt like I was dying at times. Everything was put down to my under active thyroid or depression. One of my sisters has been inadequetly treated on the nhs with 12 weekly injections and is suffering more as the years go by. I still have balance problems and neuropathy which may never heal as my deficiency was left untreated.I urge you not to wait a year. I'm sure with your symptoms and diagnosis your gp at the very least should increase the frequency of your injections. As advised write the letter.best of luck to you.

outlander28 profile image
outlander28 in reply to Charlie27612

Thank you

GoneWithTheWind1972 profile image
GoneWithTheWind1972

Dear Outlander 28,

I’m so sorry to hear of your symptoms. As you see, everyone on this forum has had very similar experiences with the regulations of B12 deficiency. I’m in Australia and it’s no different here than the UK or the US. The best thing you can do for yourself is to self inject daily until your symptoms improve whoever long that may be. Start to focus on yourself and do what is best for you without delay. This is the only thing you can do. Doctors all around the world lack the full knowledge and expertise of PA. Begin your daily treatment as soon as possible. With time, hopefully you’ll improve and hope you don’t have permanent damage of your spinal cord and your nerves.

Best of luck

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