Sharing my story

Im gonna start off by apologising to any one who finds my message offensive ore selfish in any way. Its not my intention, but just like most people that suffer from b12/pernicious anaemia. I need to share and let out with people that understand.

3 years ago i was diagnosed with helicobacter with beginning to ulcer and katarr for the 4th time in 4 years. At the time i was working. I was tired to the point that i had to sleep before/after work and during every break, i was throwing up, and heading to the emergency with repeated asthma attack. For 3 months i begged the local doctor to see me (my family doctor was going threw a knee operation and was gone for the year). my asthma was getting so bad that i had constant pain/cramping in my chest and my local clinic refused to see me. by this point i couldnt go to work let alone get out of bed and after calling emergency help line, i got a nurse to contact my clinic and i got an appointment. My partner had to half carry me there, and i went to the doctor. I had been off work by 1 month by then and she refused to write me a doctors not indicating that there was nothing wrong with me and i will not receive a sick note. i could barely hold a conversation and i just broke down and burst into tears. she sent me to the nurse to take some blood test and then went home. i felt like i was dying, i could feel my body screaming for something but no matter how much i ate i didnt feel any better, and my energy was getting lower. a week later i received a letter saying: "You have helicobacter polori, you might experience a mild discomfort" and told me to get antibiotic. After the second day of taking the medication i got a sever allergic reaction to the medication, waking up with my arms and hands filled with fluid and massive pain all over my body. went to the emergency, waited 3 hours cause i was not considered "important". when i finally got some one, she barely looked at me and said there is nothing she can do and that i had to continue taking the medication and sent me home. My partner was terrified by that time. he had barely slept and kept awake day and night to make sure i was breathing. my body was shutting down, i couldnt eat i couldnt move, but every blood test in sweden came out fine, i was healthy and all was in my head. Every one kept saying i was fine, and that there was nothing wrong with me. i was blamed of trying to "Screw the systems". By the way, at that time i lived in north of sweden during the time allot of asalum seekers came to sweden. i was brought up in sweden, but my name was foreign, with mixed african heritage. The tipping point for my partner (white european) was when i was taking our dog (alone) for a walk to build up my strength, 2 middle aged men decided to start screaming at me for walking on a path. They did not yell at any one who had walked there before me, calling me names and behaving threateningly. We packed our things, and moved back to his home in ireland. I was still very sick and was by that time extremely depressed/enxiety, with massive joint pains, tinitus, asthma, dizzy to passing out, and at times i would just lay there my body shaking unable to move, to weak to call for help. Finally i got hold of an doctor and thats when i finally found out i had b12 and b9 defficiency with b12 on 111. Today i just found out my 17 year old sister have had diagnosed with helicobacter, with stomach ulcer bacteria. only symptoms she had was dizziness, she went to the doctor got directly put in hospital. got given bloodtransfusion and b12/iron injections directly with fallow up diagnosis in the same clinic i was in. (My sister is white, blond hair, swedish name). Im truly happy that she got the help she needed so quick, have no symptoms and that she does not need to suffer ore fight for any one to believe her. But i suppose thats where my selfishness comes in.... I feel extremely hurt and i have not been ready to talk about til today. Still today i have days im so week i can only lay there, my body shaking, in pain and silently crying cause im to week to make a sound. even theogh i crash less, i still have enxiety to the point of every impulse in my body is begging me to end it. I dont want to die, im a fighter i do not give up. but to have that strong impulses scares the living....... out of me (sorry). It feels like im fighting a loosing battle at times... i just hate how weak and pathetic ive become. im sorry once again if im offending any one, im aware of allot people suffering way worse right now and i shouldnt complain as much. but at times i feel over whelmed and i hope you can understand my need to finally let it out to people that might understand/share my experience and pain.

19 Replies

  • Hi Geraldie I am sorry you are having such a bad time. This is just the place to have a good grumble, get it of your chest. I do it often and others do too.

    I'm not able to help with medical conditions, but there are others here who can give you advice. How about posting your symptoms and the results of any blood tests you have had.

    Are you in North or Southern Ireland I don't know if that makes a difference to treatment.

    (Don't tell anyone but I prefer brown and black hair to blonde.) I hope that made you smile B12 deficiency does make one so miserable,

  • Thanx for the reply beginner1 :-) I will send update of my blood results eventually. For the moment I'm waiting for my helicobacter results to return. Having a really hard time eating/keeping the nutrition properly. The test has taken over 3 weeks and they still haven't heard anything. Live in south of Ireland :-)

  • well done for finally telling your story. It saddens me that your struggle seems to have been made so much worse by xenophobia.

    You may also find a few other forums on HU useful - such as the Anxiety Support and Depression support forums

    On the intrusive thoughts you might find this post on another forum useful/interesting

  • Thanx a mill Gambit62, you've always been a great help/support since I started writing. I appreciate it greatly. :-) it's nice to know that I'm not going crazy and that I've people who truly understand. Thank u.

  • A sad story indeed Geraldie

    What treatment for you deficient B12 and D are you now receiving and how about your Folate and Iron levels - are they OK?

    I too had a long and stony road to get a diagnosis 45 years ago.

    I wish you well for the future.

  • Hi clivealive. I'm still under testing period. The doc realised the birth-control I was on was causing/preventing me to get any better, so I'm off it now and received injections for 5 days in a row and for 2 weeks I felt great. I was energetic, driven and my old happy self. Then the symptoms came back, but not as bad as before. So there is progress but also different problems. Now a days half my body will get numb/tingling no matter if I sit ore stand. Before there might been feet ore hands, now it'll go from my waist down to my feet, my arms and my bottom lip.

  • Geraldie , what an awful string of experiences for you. And any nurse should know an adverse reaction to medication that is severe enough to take you to A&E means stop taking that medication!

    Your B12 at 111 is very low and I think you need immediate treatment. I'd suggest self injecting. A set of needles and syringes ( 10 syringes, 10 blue needles, 10 green needles is only £3,99 from Amazon and you could buy 10 ampoules from Germany to start with. It's far easier than it sounds, if I can do it anyone can, as I'm a big wimp.

    I found the awful on edge anxiety ( I didn't know what I was anxious about, just felt awful and edgy the whole time) was the first symptom to go.

    Good luck.

  • Better still go to the Canaries for a holiday and get your injections over the counter without a prescription for around €7 for five injections. I don't self inject so don't know about the needles. Five injections on prescription here in Southern Ireland cost €40?

  • Hi 06hollyberry. Thanx for the information. I've been researching about buying on the net, but hadn't found it in UK ore Ireland. I'll definitely have a look. The current doc was nice enough to prescribe me 5 needles and b12 capsules to self inject. I'm a proper wimp and couldn't get myself to do it, so the nurse got my partner to do instead.

  • I'm so sorry to read of your awful trials just to get diagnosed with what appears to be straightforward!

    Is injection and oral as effective as each other anyone?

    I just felt with oral you can control it perhaps

  • I take sublinguals, but you have to take very large doses to get enough, as you allegedly don't absorb the full amount. I take 5.000 - 8.000 mcg a day - plus 5.000 mcg folate. If I don't take it for a few days my symptoms returns. It's a little costly, so I hope I can take less at some point....

  • I take 1,000 ug vitamin B12 (bought on amazon, vegans can take 'em) tablets that dissolves under your tongue, which goes directly to your blood stream from there, twice a day for the moment. Also take B9/folate tablet once a day.

  • I know it is costly for sure, I don't even know what sublingual are sorry, imagine they tabs, Would injection be helpful x

  • Sublinguals are tablets you put under your tongue - you absorb the vitamin in the mouth.

    Yes, injections would be helpful, but you'll probably have to take folate as well.

  • Dear Geraldine, I sincerly hope you'll get the help you need. You obviously need b12 (and folate to go with it) to repair all the damages the low levels have cost you. Once you get it you'll probably experience a worsening of different symptoms, but that will pass. I keep my symptoms (anxiety is one of them) at bay with big doses sublinguals b12, but you'll probably need folate and magnesium at well. You might need to increase your intake of food with potassium as well (coconut water is great) as some of the processes of restauring what's wrong will need potassium (and you can get seriously ill from too little potassium). Hope you can get loading doses of b12 from your doctor! Get a blood test as soon as possible,

    All my best wishes ❤

  • Thanx Birgitteb. Last I took my blood test they said everything was dandy. At the time I was too tired to argue when I told them I had just taken an injection before the test (ended up in the emergency). I'm currently pushing for a new appointment. Thanx a mill.

  • Geraldie , no wonder you are so hurt and angry about your lack of treatment. Lack of care. Lack of basic humanity- that I can't understand, not from the medical profession.

    But I do understand exactly what you mean when you say about your body screaming for something but you don't know what it is. My body often seemed furious at me, and rejected everything I tried to give it. Still I would be struggling, tired, desperate to get home safely before sleep took over and in the meantime, only adrenalin keeping me working/ talking/ walking but like an angry impatient zombie without a life, and pretending just to keep people happy and to stay in work. Even seeing people I love became a chore, and that is awful to admit.

    I'm not there yet with treatment, but I do have choices.

    I'm not at work now, but hoping to get back there. It may still be possible. To get this hopeful, I just poured my heart out here, and asked for help.

    So you've made a good start. Luck and love.

  • Goldpharma in Germany is the company that sell different B12 capsules. I bought 3 packs of 5 to start with, then a larger box (60 I think) which I store in a box in a wardrobe.

    Works out £1 per treatment I found. I didn't find sublinguals helped but everyone is different and they're always worth a try. I also tried patches (Amazon) which helped, but needed to use them frequently.

  • Hi Geraldie

    I'm so sorry to hear What you have been going throught

    ....its a shame

    I live in Sweden and i can totally share your feeling about the health care. I've been ill for 20 years ish and the dr didn't take it seriously....its a looooong story.

    In december i was so week that i couldent stand or walk. I was fond to be borderline low in b12 and folate and have now suplimented oraly for 4 months.

    I feel better, trying to do walks everyday etc, but I'm still week and shaky. My memory is slowly coming back...i still feel i have a long way to go before i can say that i'll be fine. I dont know if the b12 thing is my problem, but i do feel better then i did in december. The dr wont let me have inj just oral supplements right now I'm taking at least 5mg cyanocobolamin a day otherwise i dont come up of bed at all.

    Wish you all the best.

    Take care!

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