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Pernicious Anaemia Society

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Anyone in Spain?

Baklava22 profile image
7 Replies

I’m living in northern Spain. My symptoms were so bad I thought I had MS. After 2 years of telling me it’s just age, arthritis etc and telling to take Ibuprofin, my dr finally agreed it could be B12 and gave me a script for 5 ampoules , one a month. I took them every day and noticed improvement. Went back to dr for more. She said No. then I gave her a copy of the book …Could it be B12? … a life saver for me. I thought she’d see the light, but instead she said the book is wrong and she doesn’t agree! So frustrating that drs here are so backward.

im ordering from Germany now but it’s easier if I could just go to farmacia here. I think the neurological damage she’s caused me is bad and I need to inject everyday.

Anybody found an understanding dr in northern Spain?

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Baklava22
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7 Replies
Pickle500 profile image
Pickle500

Wow, she said 'the book is wrong!' And only gave you one injection per month?

I think it seems to depend on the person (Dr) you get. Some of them are open to their shortcomings relating to B12 knowledge and grateful for guidance. Others aren't willing to listen to anything outside of their medical training.

Wouldn't it be wonderful if, when you went to see the Dr they asked about diet, stress levels, lifestyle and took a blood test for all 13 essential vitamins and minerals?

Instead, we have to wait until we're near collapse/heart attach/the mental asylum before we' can get the help we desperately need.

Good luck with every day injecting. Germany is usually the best bet for most people.

Technoid profile image
Technoid

The BNF ("British National Formulary") - a trusted pharmaceutical reference in the UK accredited by the National Institute for Health and Care Excellence (NICE) advises that "patients presenting with neurological symptoms should receive 1000 μg i.m. on alternate days until there is no further improvement."

Similar guidelines are present in other countries for the treatment of B12 deficiency with neurological symptoms.

onlinelibrary.wiley.com/doi...

Sleepybunny profile image
Sleepybunny

Hi,

I'm in UK.

If you search forum posts using term "Spain", you may find other forum members who live there.

Another useful book

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

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 website has useful articles and a page for health professionals that your doctor may find interesting.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort

(Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

b12-institute.nl/en/home-2/

This might be a good article to pass to your doctor.

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

My understanding is that in parts of Spain it's possible to buy injectable B12 over the counter in pharmacies. Maybe you can take a trip to a part of Spain where this is possible.

Link to thread asking which European countries sell B12 ampoules over the counter.

(Spain is mentioned)

healthunlocked.com/pasoc/po...

Link to list of Haematology societies in Europe

Haematology societies may publish articles/guidelines on Pernicious Anaemia and B12 deficiency.

esh.org/national-society-of...

foskid profile image
foskid

I thought is was available in Spain, I get some from pharmacies in the Canaries when I go on holiday although only in cyanocobalamin form.

Baklava22 profile image
Baklava22 in reply to foskid

No, it’s not available over the counter. They want a script. But I’ve found thst some little pharmacies usually in small villages, will give with no questions. I’m in the habit now, if where ever I see a farmacia to try my luck.

IsabelleFR profile image
IsabelleFR

Hola Baklava22, if you live in northern Spain, you might not be too far away from the French border?

Because in France we can buy B12 in pharmacies without prescription. French pharmacies provide "Vitamine B12 GERDA 1000 micrograms / 4 ml, Cyanocobalamine" (red box, 6 ampoules per box) for just a few euros.

Hang in there Baklava22! Just like you, I thought I had MS, or old age (...at 53) because my legs were hurting so much, very stiff, like I had no more "sap"/"juice" inside my legs, like they could break at any moment. And so much exhaustion and brain fog. And clumsy (I would drop objects, bump into walls.) After 2 years of these worsening symptoms, I could hardly walk. And then I got B12 shots starting last May (self-injection every 3-5 days, or more often according to symptoms.) The pain in my legs has disappeared almost completely (except for my left calf), and I have regained some energy. Not all is well because of my other autoimmune conditions, but still I feel pretty happy about it.

Did you get tested for antiparietal cell antibodies and intrinsic factor antibodies? (in my case this comes from autoimmune atrophic gastritis.)

Best of luck to you,

Isabelle

Baklava22 profile image
Baklava22 in reply to IsabelleFR

Thank you Isabelle, yes my symptoms the same. My lower legs were like burning rods inside and I had no balance and finally could hardly walk. I was thinking my life was over because I live alone and couldn’t even get a coffee some days. I tried fasting for days but it didn’t help. I couldn’t see any other solution. Finally after looking and researching I came across a YouTube of a guy that had the same as me and that’s how I came across B12. I looked at previous blood tests and in 2019 my B12 was 197 so I thought over the next 3 years it’s probably even lower. Dr agreed and gave me script for one box of 5 ampules in June. One a month. But I used one every day and noticed improvement. I asked for more but dr said no. I managed to get 2 boxes out of a small pharmacy in Catalunya. And then bought the one you say from France. I find that because it’s 4 mls it hurts a bit and leaves a big lump thst I have to massage away. But yes, looks like I’ll need to stay with thst one between orders from Germany.

Isn’t it ridiculous thst doctors will give you as much ibuprofen as you want but not a harmless B12 .

Thanks Isabelle

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