PA since puberty


I am from Belgium. 

Sorry if my English is not that great. 

Had my condition since puberty. I am 40 years now. Diagnosed 2 years ago. Took me1 year to get my injections 3 times per week. Had to fight for it. My daughter was born with split upper lip and ADD. My son has enormous learning disabilities. 

I feel alone here in Belgium with my condition.

Gr. R

15 Replies

  • Sorry to hear that you have been suffering without the condition being recognised for so long, the impact on your children and that you are feeling alone.

    I can trace some of my symptoms back to before puberty - I'm now in my 50s and I was only diagnosed a few years ago - so can relate.

    It generally seems to be a fight to get B12 where-ever you are.  Guess Belgium must be even more so given the rules on sourcing prescription medicines from outside of Belgium.

    Your English is fine - better than my French and certainly better than my non-existent Flemmish and Walloon!

  • Really sorry that you feel so alone with P. A,  But look, you are now part of our community , so you have many friends!  So glad that you have found us. You can always come to us. Your English is so good! Very best wishes . 

  • Hi regulake21222 


    You are not alone now we know you are there in Belgium and there are many people on here who will be able to give you good advice to any questions you have.

  • I am moved by the fact that there are allready 3 replies on my first post.

    Really,...Thank you!!!!

  • That is terrible. Your English seems very good so you may benefit from looking up Sally Pacholok's books- Could it be B12? and there is a new one about autism in children. 

    I hope you start to feel better soon on your frequent injections. Try to continue as long as possible. I was diagnosed as B12 deficiency after about 8 years of symptoms and had severe neurological symptoms, most of which have resolved. The guidelines do say 2 monthly maintenance for neuro symptoms but most people feel better on more. It is very individual.

    Good luck!

  • In my country it depends on the doctor you are consulting. Some say every month, some say every 3 months, some say ones a year!

    I finaly found a doctor that would go to 3 injections a week. He is retired as a doctor and I told him: 'what do you have to loose?' 'Look it up. There's no way you can overdose me. Watch the documentary 'Living with the fog' and phonecall me if you did so.' I tried to have less injection after a period of 6 months, but it got worse then. I must say I still have some neurological problems. Probably some damage can never be undone.

    I can't selfinject because here in Belgium it's forbidden for patients to do so. 

  • Yes, the regime governing medications in belgium does appear to be particularly strict - terrible that you aren't able to ensure you get a decent quality of life because it would be illegal for you to do so.

    Some people do seem to need much more B12 than others - there is a condition called functional deficiency which, if I've understand it correctly occurs because some of us have an autoimmune response to high levels in serum that means we create a protein that binds to the B12 in your system and means it can't get into cells where it is really needed.  Keeping levels so high that you have more B12 in your system than you can create antibodies to seems to be the only way round this if you have an absorption problem.

    Know I get through several mg of B12 a day.

    Have you tried other forms of delivery of B12 - they can be effective - I find nasal sprays work very well for me - just as well otherwise I'd be a veritable pin-cushion :) - and quite possible that they would be covered by the rather restrictive regimes on medicines in Belgium

  • You can get Hydroxocobalamin B12 Ampoules  from Amazon de.(German Amazon)  If you are familiar with Amazon you will find it easy to use. Search for "B12 ampullen." You should get a lot of results. Look at them ,enlarge the packets, and make sure that it states "HYDROXOCOBALAMIN" not Cynocobalamin. Hydroxocobalamin is superior.  You can inject sub-cutaneously(sub-cut) or into the muscle((I.M.)  Hevert depot offer 2ml X 1mg ampoules and Rotexmedica (I think that's the name ) offer 1ml x1mg ampoules.That will determine which syringes you order (also Amazon de)  The method of injection determines the needle size you need. For each injection you need 2 needles---one to extract the fluid from the ampoule (it should be long ro reach to the bottom of the ampoule. )This can blunt the needle, so you need another one nice and thin for the injection. You also need swabs  to cleanse the place where you insert the needle. 

    We in U.K. have to get our B12 ampoules from abroad also. Crazy, isn't it?  I have been self-injecting for 2 years now, and it keeps me well. I just inject every week.  

    If you need any more information, just get in touch. Best wishes to you.

  • Unfortunately it is illegal to source any prescription medications from outside Belgium unless it is licensed specifically for use in Belgium - and that seems to apply to specific brands etc when it comes to B12.  It used to be the case that it was illegal to source from outside Belgium at all but there was a recent EU ruling that this was contrary to EU provisions on competition, but the change in legislation fell a long way short of enabling the same sort of provisions as we have in the UK where we can actually import medications from outside the UK when they aren't available in the UK.  Whilst I guess it would be possible to cross borders to Germany or France and get shots there I think the regime in Belgium would probably prevent you actually bringing the ampoules back into Belgium.

    Crazy I know.

  • Thanks Gambit 62. I had no idea.  Yes it does seem crazy.  It is a real tragedy also But as borders are so easily crossed , it must be possible to bring B12 ampoules over . I know that I would do it. 

  • Hello and welcome. As others have said you are not alone now and I am sure there must be others in Belgium suffering in silence. Hope your comment on here will result in you making local connections as well as virtual ones. I know I have found the virtual world indispensable in managing this condition so hope you do too! Self injection is not allowed in UK either, but afraid many of us are forced into that route as it is the only way we can get the amount of B12 we need to feel well.

  • Hi regulake21222,

    Welcome to our forum, you have come to the right place. Have you ever had your Folate levels checked?  B12 needs a good level of Folate to work well.

    Please do a little research on MTHFR. The reason I mention this, is because this mutation may be connected to your children's illness.

    Keep in touch my Dear


  • Hi, there is one good thing to come out of the internet age, and that is we are no longer ever alone if we chose not to be.

    As you know self injecting is frowned upon here in the uk too but as you will also know many have resorted to doing just that in an effort to help keep them well. I was diagnosed 9 months ago and it has been a fairly rough ride especially as the drs are reluctant to address the symptoms i have by giving me more frequent injections. 

    I was nervous about self treating this at the beginning as i wasnt sure what i was doing to my body, but i now use methyl patches and methyl drops both sourced from the internet, with a good success rate until i need a bit more close to my 3 month jab.

    I have also got some methyl and hydroxo ampules and am going to self inject after my next regular jab to see if it gives me a better result than the patches alone.

    It has to be said that it isnt an easy condition to deal with as there is a lot of ignorance from the medical profession about it. also the other vitamins and minerals needed to make our bodies the fine tuned engine that we want them to be can be a lot of trial and error getting it just right. Because despite many drs thinking that one size fits all in respect of treating b12d it certainly isnt as simple as that.

    You will find many knowledgable and friendly helpful people here who can give advice based on personal experience of living with b12d, PA.

  • You can always get help and great advise on this site

  • Again thanks a lot for all these helpfull replies. I've learned much from all of you.

    It took me a while to read them thou ;-) . Medical terms are allmost the same in Dutch. Except for Folate (in Dutch it's 'Foliumzuur').

    For starters, I get the wrong kind of B12. In the two years I got injections, I had two different types of B12. Both are the cyanocobalamine type. The ones I get now are 'Neurobion' It's a mix of 100mg B1 + 100mg B6 + 1mg B12 (together it's 3 ml) and that 3 times a week.

    I had a look at the Amazon website and find the ones that Wedgewood talked about. But my hubby didn't like the idea of trying to buy meds and needles online. I will give him some time to get use to it.

    Some of you tried to explain differend kinds of B12 suffering. My doctor searched several years for a diagnose that was of an auto-immune type. I had all the symptoms. Neurological (walking with crutches, dropfoot, balance), eye problems, headages, tooth and mounth problems, phlebitis all over my body, netlle-rash, tiredness. My B12 was under the limit, so the doctor gave me some pills for it. But when I took them I got nauseous. Not ones the doctor checked if my B12 normalised after taking pills. She send me to many, many specialists, rheumatologists, neurologists over the years. I went in observation in the hospital for 1 week. The tests of my symptoms all came out positive, but the bloodtests for an auto-immuun disorder where allways negative (I tought). They send me back home undiagnosed. (Except for spasmophelia and a referral to the Psychiatrist). About a year later I got a copy of the doctors report in my hands. When I red it, I got very angry. There was a positive test on antibody's against parietal cels or was it intrinsic factor (sorry I allways seem to mix them up). The doctor wrote that there was no issue since I didn't have a B12 shortage. He didn't asked if I allready took B12 pills. And the fact was that I got a few injections of B12 (because I got nauseous of the pills). My general doctor just didn't read the report properly, and didn't make the link with the injections and pills I got before the bloodtests.

    To get my official diagnose I had to completely stop take B12 in any form. Had to wait till all my symptoms where back in the most heavy way I can remember. The ambulance had to get me from my work to the hospital. Then they took my blood and checked my B12 and did the auto-immune tests again (only because I insisted ). Guess....right... Positive. Treatment? NO. First I had to meet a gastro intestinal specialist for a scopy, and when he said it was PA, I could go to the reumatologist to hear 1 injection a year should be enough.


    Can someone tell me where to find the Nasal Spray Gambit talks about?

    'MTHFR', I tried to look it up, but I can't really focus on that subject now. It's to hard for me to untherstand what's it about. I will try that later on.

    My folate was to low, but I never took the pills because it was in the instructions never to take it when you have a B12 shortage.

    Time to rest now.

    I still have a full time job from Monday till Friday, and two kids to take care of.

    Thanks people!! And see you later.

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