Just been diagnosed - scared - Pernicious Anaemi...

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Just been diagnosed - scared

1987star profile image

Hello, I’m 33, live in the UK and have just been diagnosed via a blood test. I am to have 6 b12 injections over two weeks then one every three months as a first goal.

The nurse is contacting me today to book my injections.

My dilemma is I have a fear of new medications/vitamins etc… it’s a genuine fear where I can’t seem to control my emotions and I end up crying, fast heart rate, getting hot etc.

I need to have these injections as I feel awful and am really looking forward to feeling better.

I have already researched and am logically aware it’s very unlikely I will suffer any bad/extreme side effects.

I guess what I’m asking is if anyone can please share their experiences on first injections…. What to possibly expect, any adverse reactions or very positive reaction? The more I can prepare myself mentally for a realistic experience the stronger I will feel mentally going into the first injection.

My husband will be coming with me for support.

I am also seeing my therapist for a booster session on controlling fear/anxiety when presented with the thing I’m fearful of 🤞

The ultimate fears I have about having the B12 injection is I will end up having a panic attack (let’s face it, absolutely no one wants that to happen) and that I will have a severe allergic reaction 🥲 logically I know this is a very unlikely scenario but I cannot shake my current head space.

If you got this far in my post, thank you so so much, any advice/tips/reassurances most welcome 🙏

80 Replies

I noticed absolutely nothing after my first injection (my GP didn’t offer loading doses but put me straight onto every two months). I didn’t feel any better and I didn’t feel any worse.

After a few injections realised I felt better after them but declined again as the next was due. I ended up increasing my injection frequency and now I feel good just about all the time.

As far as an allergic response is concerned, I’ve got loads of allergies. Cats, dogs, dust, feathers, pollen, hazelnuts to name a few. I even had anaphylaxis after eating a peach. However, I have absolutely no reaction to a B12 injection.

It wasn’t a symptom for me but from what I read from others, you may well find that your anxiety improves once you’ve had your B12 levels improve.

1987star profile image
1987star in reply to JanD236

Thank you so much for your response. It has helped to reassure me so much, especially with all your other allergies. I am only allergic to Penicillin (severe) and pollen (hay fever) so not sure why my fear got so out of hand.

And I agree, the foggy head feeling, swaying and tiredness along with all the other horrible symptoms are bound to make any anxiety worse. I’m not a daily anxiety sufferer thankfully, only when I have to conquer a fear, but it does feel a bit worse this time which I am definitely thinking Is part of the deficiency. i really appreciate your reply 😊

Yes you need themAnxiety was a severe symptom of b12 deficiency

I dud not know this at thd time.

Iy was fortunately one of tgd first things tk resolve

Try and relax your arm as so much better

After thd first one yiu just get used to it. I was very poorly abd it dud seem to get worsdx first but I carried on as nothing else's found wrong with me to treat.

Some get benefits straight away.

Depends how low an for how long untreated.

I hope you pick up very soon.

They are not offered ightly.

The guidelines say 2-3 months maintenence .

Many need more thsn thus.

Hooe ig goes well

We've all been there!

1987star profile image
1987star in reply to Nackapan

Thank you, I appreciate your message. I’m also pleased to hear it helped you with anxiety, that’s a definite positive.

I’m not bothered about feeling worse before I get better fortunately, as I have discovered it almost seems 50/50 as to whether it will positively help you almost straight away or if it takes time and possibly feeling worse before you then start to recover. I know I will feel so much better an hour after the first injection (mentally) and it will be upward on onwards from there.

I just need to keep calm and relaxed for the injection, and keep myself busy/distracted for the first hour after it then I can be almost certain I will be fine.

Its great you've got a diagnosis and treatment arranged to start soon. You're feeling awful, and the treatment will make you feel better.

These are both great reasons to be hopeful!

Anxiety is a side effect of deficiency so try to tell yourself and others that everything is moving in the right direction for you to be better. And you have the support of a nurse to help you. You'll be back on track soon!

Thank you, I’m praying my nurse is empathetic and understanding, that will really help me. I’m also going to ask them to extend the appointment by 5 minutes so I can talk to the nurse after the injection (help distract my mind from over thinking) I’m hoping my therapist can give me some good advice on how to stop the over thinking so I can hopefully sail through it. But if I prepare for a worse case scenario (panic attack) it can’t get any worse for me 😂

I will definitely update on here how it went.

And that’s the part that’s really giving me motivation to get through this, that it will actually make me feel better 😅 I’m not just going half mad.

Your body will be so happy to get all that B12 into your system to start sorting things out. My panic came from not getting the treatment I needed, so when it came to a private injection I couldn't wait to get it in me!

The nurse will comfort you and the risk of any problems are very low. Get the first one done and you'll feel calmer.

Good luck

Sallyannl profile image
Sallyannl in reply to 1987star

Every body experience different reactions.I didn't get treatment for over 18th months so I was really poorly, my brother was completely different,

I adviced him to eat a banana an hour or so before injection and he sailed through no problem.

I would advise eating a banana before.

In a few months time you'll look back and think what was I scared of. (Its the unknown but nothing to be afraid of) If you need support someone here will always help, if its only communicating , or reassuring you.

Best of luck and good to know that at least one gp is on the ball and giving you the right treatment.

1987star profile image
1987star in reply to Sallyannl

Thank you, do you mean you were really poorly from the deficiency of B12 or from the injection?

I’m pleased to hear your brother sailed through 😃

Yes I will definitely eat before hand.

Thank you for your kind words.

Sallyannl profile image
Sallyannl in reply to 1987star

Sorry I should of said before. It took a few months to feeling near normal, it was all down too not being treated when first diagnosed. Where my brothers was treated with in a few days of the deficiency.

It’s great that you have a diagnosis , as PA. is difficult to get a diagnosis for ( take too long to explain why now ) This will change your life . Anxiety is one of the symptoms of P.A. / B12 deficiency. So you will benefit enormously . Absolutely nothing to be worried about . You will be amazed at the difference B12 injections will make to your life . Your anxiety will fade away after 6 injections . Then you will need injections at a regularity which keep symptoms at bay ( this varies from patient to patient ) I wish you all the best . .

1987star profile image
1987star in reply to wedgewood

Thank you, I do like the idea of no longer having bouts of anxiety, that definitely out ways the fear of B13 itself 😂 how ironic that the thing I need to stop feeling this way is the thing I’m scared to have.

Hi 1987star I am allergic to metals [necklaces etc.] except gold! Also Napisan [remember when babies wore cloth nappies] and wasp stings. When I had my first few injections I had no reaction, neither good nor bad. The good came later, I had no bad. The bad comes if I miss an injection, I get upset and bad tempered.

Promise yourself a treat after it and keep thinking about that.

1987star profile image
1987star in reply to beginner1

Thank you so much, lovely reassuring post. That’s a great idea about a treat as well, I’m already feeling more positive.

My first injection is on Monday 5th July (the earliest they could do) I think by the time it comes around I will have successfully retrained my brain to think more positively and will be kinder to myself. I have a little excitement in the back of my mind about in the weeks/months to come I will feel better 😃 so I will push that to the front of my mind and focus on that.

It’s brilliant that every single person with this always feels better in the end, what a relief.

Sallyannl profile image
Sallyannl in reply to 1987star

Be positive and look on the bright side, you now know what is causing you to feel awful, and injections aren't that bad.

beginner1 profile image
beginner1 in reply to 1987star

On July 5th I will be cheering you on. 🍷

1987star profile image
1987star in reply to beginner1

Thank you so much 🙌 every bit of support makes a difference to me 😃 I will be brave and I will get better 🥂

Hi 1987star,

Welcome here, yes as others have said, B12 deficiency can have a great impact on mood. Whilst waiting between being told my results and loading doses, I would get really sentimental, cry at tv adverts and other things.

I had been deficient for quite some time, my levels were pretty rubbish so, for me I got worse before I got better but knew my nerves were healing. It’s a journey for all of us but a step in the right direction.

Wishing you the best

1987star profile image
1987star in reply to Narwhal10

Thank you for sharing, do you mind me asking your level when you found out and what you were experiencing with symptoms prior to treatment starting? My level is currently 130 and I have so many things regarding symptoms it’s hard to keep up with them all. I feel like I get worse each week 🙈

Narwhal10 profile image
Narwhal10 in reply to 1987star

Hi 1987star,Sorry for the late reply. I’ve coeliac disease and haven’t responded to a gluten free diet. There’s lots of interactions between other vitamins and minerals. Worked with a dietician to correct other deficiencies . Plus, we are all different. But:-

Cluster headaches/trigeminal neuralgia (it’s a very distinct facial nerve pain)

I’d mix up my words and forget how to pronounce things. 🙊

Difficulty swallowing.

I already had fatigue (I’ve meditated for years to cope with this) sinusitis, sore throat, swollen glands, joint/muscle pain, difficulty regulating body temp. (I put it down to gluten but it didn’t get better).

Every evening I’d get this one patch on my right chest which burnt. Weird.

I had hand tremors (videoing it was pretty hard).

Pins and needles in both hands, weak grip.

My bladder control was poor and at certain times of the day, urinating every 10 minutes (bought nappies)

I had ataxia (like a drunk person’s walk) - I walked into the wall in the GP surgery.

Pins and needles in feet.

Burning foot syndrome.

I was breathless, high heart rate at rest, very dizzy which I put down to low ferritin. I burst out crying with relief when I rang for my results. Loading doses and a prescription for iron. 😥

I love sport, my running days are over. Recently posted I walked 11 miles. I aim for 6 sometimes it’s only 3. Hope this helps you.

Sending well wishes. 😊🐳

1987star profile image
1987star in reply to Narwhal10

Thank you for sharing this with me. It must have felt incredible to walk that distance. I normally walk between 2-3 miles daily in the week with the dog and 4-5 miles at the weekend. Afterwards would normally carry on my day, now I have to rest for a while as my muscles feel weak.

I lost the ability to swallow four years ago, took me a year to retrain myself how to swallow/eat properly again. I had so many tests… camera/x-rays/scans… they never found a cause… I wonder if this was anything to do with B12… looking back that’s really when life changed for me. Burning sensations for sure, feeling like I had been stabbed with a hot poker… I used meditation and therapy to over come most of these issues and as I was able to eat more foods I started to feel better each month. Until more recently when strange things started happening again.

Really appreciate the chat 😊

Narwhal10 profile image
Narwhal10 in reply to 1987star

My pleasure. Poor you, with regards to retraining yourself to swallow. We need to nurture our bodies - so, when it needs rest - do.My phone goes on airplane mode. There’s a lovely saying (well, I think it is),‘The body whispers and then it screams’.

How many of us ignore aches and pains push through things because of ‘external’ demands -such as pop to the shop as we’ve run out of milk as visitors are coming. Now I text them and say bring milk. Pacing is key.

Oh I get very broody for dogs as I had a boarder collie. Everything is crossed for the 5th for you. 😊

After my first jab, I had a headache, but I had had undiagnosed P.A. for decades, so I think my body was a bit surprised at having this stuff that it had forgotten about for so long suddenly there. Plus I was really scared and worried about things, which didn't help. I spent that day worrying about what could go wrong after the jab, but of course, nothing did.

After that first jab, I felt much more relaxed, as I knew that I was on the road to recovery.

My improvement was very slow, but sure. I think I'm about five years-ish from first diagnosis and can now go out for three mile walks, stride up steep hills and still hold a conversation, look after a very active and cute grandbaby and generally do most things, which is something that I would never have believed back at diagnosis, as just getting through the day was a challenge.

Its a scary thing, being diagnosed and needing jabs, but within a very short time, you will adapt and get used to things. I even managed to overcome my fear of injecting myself, which was huge. First time I had a full on panic attack, threw up, the works. Now its just second nature.This forum is wonderfully supportive and whatever questions you need answering, you can be sure that someone will help. No question is too small, just ask away, and remember, you are not alone.

1987star profile image
1987star in reply to topazrat

Thank you so much, it’s so nice to read I’m not the only one who was scared about what may happen afterwards, your story is an inspiration and very comforting to me. I walked a 2 mile walk last weekend around a large pool and managed fine, hills are now avoided or taken at a very slow pace as I hate feeling breathless (4 months ago I had no problem holding a conversation walking fast paced up a hill) it seems to have come on out of nowhere for me in the last 2 months with so many symptoms getting worse each week. I can’t wait to say I’m starting to recover. After reading many other people’s experiences I feel very lucky I have been diagnosed so quickly after symptoms really kicked in and started to become very noticeable.

I noticed no difference at all after my first injection, some people find that the injection itself can be a bit sore and you might find a bit of discomfort as the B12 goes in but try and stay calm and once you get the first one over you will wonder why you were worried and then hopefully start to feel some improvement, good luck and I hope all goes well for you😃

1987star profile image
1987star in reply to pitney

Thank you, I hope I get a nice nurse 😂

pitney profile image
pitney in reply to 1987star

I know what you mean 😂

You don’t say what your symptoms are. I ended up with pins and needles after my first injection because I had some nerve issues (numbness) in my fingers and toes.

So the nerve repair/waking up feels initially like it is exacerbating the problem for many people. So my first thought was ‘oh shit what have I done’ because I thought I’d made it worse. It isn’t but the nerves learning to communicate again can initially feel like pain.

I remember having a burst of energy (not sure if it was genuine or imagined) but that was quite nice.

Good luck. I have read elsewhere by a doctor that of all the people they administered b12 injections to, none have had an allergic reaction. The risk is theoretical but incredibly unlikely,

Good luck.

Thank you, I do have some pins and needles on my left fingers, not everyday though?

My main symptoms are very tired, low energy, swaying sensation, sore tongue and leg pain on and off.

And thank you for sharing what you read from a doctor.

I was diagnosed in March this year. I had 6 loading injections over 10 days then another 6 after a 2 week break. I now SI twice a week (Hubby gives them to me). I was overwhelmed with the diagnosis, fear & information overload etc. I joined this forum and instantly felt like I had a huge arm around me with fellow sufferers offering support & advice. I see every injection I have now in a positive way, my body needs it to heal & survive. Vitamins are essential for life & I have realised just how important they are. Anxiety can be caused by b12 deficiency so if you can try and see the injections in a positive way it may help you with your current plan to get on the road to recovery. Good luck and I hope you start to feel better soon.

1987star profile image
1987star in reply to LJH50

Thank you, that’s exactly the mindset I am working with, I will get used to it and adjust to it, I will be patient and kind to myself, then when I am able to notice a difference in myself I am going to feel so proud, which will of course enable me to push through even more and I’m sure by the end of my loading injections it will feel normal.

I really like hearing how absolutely everyone always feels so much better weeks/months after starting treatment. I know there will always be room for improvement and it will take time to get all my levels balanced etc, but knowing there is light at the end of the tunnel relatively quickly for things like tiredness and energy levels is music to my ears 😊

LJH50 profile image
LJH50 in reply to 1987star

I didn't notice any improvements until recently and I am still not back to normal but I feel I am getting there so don't feel disappointed if you don't notice an improvement straight away. It can take many months for some people to even start to feel the benefit.

1987star profile image
1987star in reply to LJH50

Thank you, yes of course I need to be realistic and be aware it may take more time to feel better. I’m not expecting it to be a magic instant fix, just to not feel to exhausted would be a fabulous start 😭😂

It’s good to hear you are now starting to feel improvement 😃

After I had my first injections I felt as though the sun had come out. After so long feeling sad, bleak, anxious and unlovable, I woke up one morning and just felt happy and excited about the day ahead and remembered that this used to be my normal. I don't enjoy the injections, but it is a small price to pay. I hope it will be the same for you.

1987star profile image
1987star in reply to ABC852031

That’s fantastic for you, oh what a sense of relief you must have felt when you were getting more days like this than foggy days.

I have the motivation to feel back to my normal self, luckily for me I have only been dealing with these symptoms for the last couple of months, which I’m really hoping means it won’t take more than a couple of months for me to start feeling better again. I try to look at everything as a positive and stay focused on the end goal.

Iv had one moment where I just got so upset and cried it all out.

I try to accept my symptoms for now, rather than get down about them or anxious, I try to work at a pace around them. I can’t wait to not have to even think like that.

Do you take anything else alongside the injections?

ABC852031 profile image
ABC852031 in reply to 1987star

I also take 5mg of folic acid a week but there are others on here much more qualified to give advice about what you should do than I am x

1987star profile image
1987star in reply to ABC852031

Thank you, I am going to get some folic acid as a friend said the two work well together.

Hi 1987star, as many have said your current anxieties could very well be caused by your B12 deficiency so having your loading dose injections will help you so much. I personally find the injections (being realistic for you) slightly painful, well more of a pressure feeling when the injection is going in (maybe because I'm a man lol), this passes in seconds but when you are new to these injections it does feel like time stands still for that moment, but as I said it passes and in a matter of seconds and is well worth it. It will change your life in so many ways for the better. Be sure to let the nurse know about your anxieties and that it's not just a needle phobia as she/he may presume. Give yourself a mantra e.g. 'This is the start of the new better me' and keep that in your head. Remember to breathe, deeply if need be and use any other coping strategies that your therapist has recommended (that have worked for you). WIshing you all the very best and I look forward to reading your next post about how it all went so well for you. 💗

1987star profile image
1987star in reply to ajervis

Thank you so much, lovely kind words. And yes, love the mantra, I think that could really help me, hell I will say it out loudly if I need to 😅 as I’m starting to open up about it it’s already feeling more of a normal concept and not a huge scary one. Will I be nervous… yes. Will I be excited… also yes. Thanks again, I will explain my fears to the nurse if I feel I need to.. sometimes it’s better to almost pretend you are normal as it helps with the positive thinking etc. If I feel a may cry or start feeling any kind of panic I will then talk with her. It’s already on my notes about my fear of medication so she will be aware before she even meets me.

I was the same as you for my first few shots , now I do it myself its not to bad . I almost forgot I've been getting my shots for 21 years now every month

Thank you, did you go from feeling anxious and fearful of having them to accepting and comfortable then? It’s so nice to know I’m not the only one that gets myself into a silly head space about such things… i wish I could have one this Monday to just get that first one out the way, but they won’t see me until July 5th as earliest appointment available apparently.

Gambit62 profile image
Gambit62Administrator in reply to 1987star

sorry to hear that you have such a long wait for your first loading shot - waiting for something is often so much worse than it actually happening. Good that it does give you time to get some support in relation to the phobic anxieties.As others have said - actual allergic responses are extremely rare. Hydroxocobolamin is considered so safe that it is the treatment of choice for cyanide poisoning - in doses that are 5000-10000 x the dose you will be receiving - the actual risk factor for that treatment is hypertension because of the amount of fluid that needs to be used to get that much B12 into you intravenously - your injections will be done into muscle so there won't be that problem. People with sensitivities to cobalt are the only ones I've seen on this forum who have actually have problems with allergic reactions.

I self inject now but I did get a bit phobic about injecting myself after experiences with anti-coagulants after an operation for a broken ankle - found them incredibly painful but reality is that I was also B12 deficient at the time and pain sensations just don't work the same way when you are B12 deficient. I don't actually remember my first B12 injection - it was just as I was waiting to leave hospital after the broken ankle.

Feel free to repost if you want further reassurance before the 5th July

Apparently the 5th of July is celebrated as: National Apple Turnover day, National Graham cracker day, National Hawaii day, National Workaholics day and National Bikini day. I hope that doesn't mean that you have to run up wearing a bikini and with a pack of apple-turnovers and crackers :)

nationaldaycalendar.com/july/

1987star profile image
1987star in reply to Gambit62

😂😂 thank you for ending the post with some humour, and for reassuring me of the safety of the B12 injection, that was good for me to read. I feel like I want to injection this Monday now… I need to get one done so I can move forward. I’m going to call them Monday and explain my situation and plead with them to allow me to have one injection this coming week to allow me to move forward with the rest without fear, the unknown etc. I suppose it’s best to just rip that bandaid off. I feel a far more sense of calm about it all today, rather than shear panic and uneasy. I need to roll with this while I have it and take the plunge. Plus I am going on holiday the week before injections start so would feel more relaxed knowing I have already had one and will be fine.

Wish me luck 🤞

Gambit62 profile image
Gambit62Administrator in reply to 1987star

Hope it all works out for you

Ctadds1 profile image
Ctadds1 in reply to -Dark-Ang3l-

21 years, amazing :)

Are you symptom free? Did it take awhile (days/months/years) to recover?

Don’t be scared. It is a great none event, a quick injection and begin to feel better very soon.

You will be given a slightly longer first appointment anyway, as a precaution against the vanishingly small, but never to be ignored, chance that you might have an anaphylactic reaction.

Same as we all have to sit for 15 minutes after a COVID jab, just in case, before they let us go.

The next hurdle, one we had to cross, will come if you find that the three-monthly jab isn’t enough, and they won’t give you them any more frequently, so you have to take matters into your own hands (literally) and start self-injecting. That’s a hurdle that gave us pause, at first, but now it’s as natural, and almost as streamlined, as taking an aspirin, or whatever.

Lots of advice and help on here when you are ready for that step!

Thank you, yes I have been told by several people there is a chance that waiting 3 months will be too long to wait and I will feel myself needing the jab. I will cross that bridge when I come to it.

My husbands cousin injects B12 at her salon. If she uses the same as the doctors I will go to her to begin with until I feel confident enough to do it myself.

Thanks for the advice

Litatamon profile image
Litatamon in reply to 1987star

If you have neurological symptoms you are supposed to get the shots every other day, until there is no more improvement. That is the protocol.

I have not read the entire chain, so possibly someone has already pointed that out to you. I feel that that choice was critical to my healing. I ignored my doctor who was not on board with that, and did it myself right away. I literally started self-injecting at the beginning. I thought it isn't her health if she is wrong.

Hi,

Diagnosis is a Godsend.

I remain to feel frustration for everyone running around to doctors and suffering needlessly.

And since I suffered for years before diagnosis, well it was like Christmas morning for me.

If I had 32 symptoms I would say 80% of them, went poof within the loading time period or very close to that period. Literally just disappeared. A few tried to reappear, but at the most once or twice. The ones that have remained have been frustrating to deal with but I try to focus on being thankful.

And as many posters will point out there are often tiny improvements that we miss when focused on the frustration.

I also would like to point out that some symptoms were not b12 for me, they were from a severe vitamin d deficiency at the time.

As for injections, zero issue for me whether at the doctor's office or self-injection.

I have tried cyanocobalamin, hydroxocobalamin and methylcobalamin injections. All played out differently for me. Some people feel no difference whatsoever. Methylcobalamin made me feel bat shit crazy. With the inability to sleep.

I have explained the difference emotionally for me to those I am close to as this -

Say someone used to easily have me in tears and frustration that could linger for days. Now that same person could frustrate me but I might shake my head and sigh and be done with it. Or their ways could make me now just laugh in my head.

Please know that every person reacts differently before you read this next part. Some people sail through once they have an injection in them. And that could be you. I had a severe reaction between loading dose two and three. At the time I could not see what is was but I truly believe it was my body healing in real time and now I am thankful.

I had an 18 hour crazy situation where it felt like someone was severely zapping me every fifteen minutes. I literally could not sit or lay down., It was that intense. I paced almost the entire time. I thought about calling for medical assistance, but didn't. And then it just stopped. Just like that.

I really feel that my body was reprogramming, sort of speak.

But please remember that many have none of these intense moments. But am telling you so you know that there can be steps back, before forward. Keep the faith.

Magnesium was a Godsend during that period.

All the best to you.

1987star profile image
1987star in reply to Litatamon

Thank you for your honest post. I really appreciate it. It is important for me to remember there may well be steps back before steps forward. I think after all the bizarre sensations we as B12 suffer with for so long it’s hard to tell what’s what anymore. And I am aware it is a huge part of the nervous system and that many people begin to feel things they had almost forgot about. It makes sense what your saying about the zapping feeling, that must have felt so peculiar. I’m so glad it stopped as abruptly as it started for you and that 80% of your symptoms improved so quickly, that’s incredible. After everything you have been through and to still be 100% pro injections, being one of the small minority that did suffer negative effects is great to hear. So many people say “not worth the side effects” with many different medications, but it seems with B12 it always always ends in a big big positive 😃

" - it seems with B12 it always always ends in a big big positive 😃" There you go, you've nailed it.

Another thought - I found the anxiety, the feeling miserable symptom was the first to go, I think it went with the first or second injection.

1987star profile image
1987star in reply to beginner1

Thank you 😂 its an awful job having to persuade an anxious, fearful over thinker 🙄😂 but you guys have really put me at ease, made me realise there’s not really such a thing as a life threatening reaction to B12, just side effects from your body coming back to life 😅 which clearly not everyone gets, and the ones that do say it was all worth it. I will be re-reading these posts every other day or so to keep me in check with my positive mind set whilst I wait for 5th July 1st injection 😊

And if I can shift anxiety in the process (which only started 4 years ago when I lost the ability to swallow - reason never found) that would just be a huge bonus 🙌 I am seriously questions if that was to do with B12… it took me a year to retrain myself how to eat properly. Came on out the blue. Looking forward to a brighter future 🥂

Hi! I am glad to here your deficiency has been found, is it s positive diagnosis of PA? I understand your feeling of anxiety about the first injection, when I started the loading doses in 2018, I felt worried about having to have so many close together, I don't like needles and I had anxiety and slight paranoia about some things. I can honestly say that I felt positive differences after the 2nd injection, and then more each time. After the 2nd, I felt like my brain had been plugged back in and I could think like the old me. My general anxiety and worry also alleviated from then, and other things like tingling, energy, joints, pains, digestive system, my sleep, all started feeling improved from 3rd.

Try to visualise and think about feeling good again once, literally healing flowing into your body!

Good luck.

1987star profile image
1987star in reply to eclilley

Thank you for sharing your experience, sounds like you have had a very positive one, I’m pleased to hear your feeling better than you were. I totally understand what you mean about the brain being plugged back in… I keep waiting to feel like that… it’s not happening 🙈 I’m guessing that will come once injections start… until then I am to remain a cloud 😂

Yes it has been diagnosed as PA, doctor confirmed this over the phone. He was very brief but I am seeing him in person the day after my 1st jab… I have many questions.

And yes, love the visualisation of healing flowing into my body… that’s a great one to keep at the front of my mind. Thank you 😊

eclilley profile image
eclilley in reply to 1987star

Great, think positive!Mine was positive at the beginning when on loading. I then had a lot of problems getting adequare treatmrnt & still am - but I am in Gloucestershire and their treatment regime has been appalling!

When mine was finally & grudgingly found (I am IF negative, so not a definite PA but had masses of symptons inc neuro, & brother was found to be same as me at same tine!) , I was told 5 loading then wait 6 months & be re-tested to see if level ok, & then maybe go onto 3-monthly. Nothing was investigated further as to the cause/diagnosis. ...That was out of line with the most basic in the NICE guidance. I tried getting sooner as I felt terrible, it took me til 5 months after loading doses, but I then got agreement to 'trial' 8-weekly.

Had 8-weekly for about a year - lots of symptons gradually got better, dipped in between, but felt I couldn't ask for more.

Then in Spring 2020 they stopped them (as for lots of other people). All symptons started returning and I managed to get another 'trial' as of Jan. But have had bad returning symptons and additional nerve involvement.

Still haven't got sufficient treatment - I would like to be restarted on EOD jabs really, but being in Gloucestershire I doubt I will get that! I want to avoid SI if I can, but I feel it is probably going to be the route I have to take.

Moral of this for you - lap up the frequent injections for as long as you have them offered, don't let them retest your levels to reassess you, dont let them stop your jabs!

Xx

I did self injections and it took me 15 minutes to work up the courage to do the shot. I had awful anxiety at the time which made it really difficult.

Eventually I put the needle into the fat in my stomach. I jabbed myself a bunch of times, hesitated, tried again, but I was able to inject.

This was methl I was using at the time and it didn't really burn. No reactions either.

My first time with hydro was different, and I had bought some much larger needles. It was also the first time I'd used these ampules. These are 2ML ones from Hevert.

Anyways, it took like 10 minutes of extracting the liquid, sitting around, changing the needle after multiple aborted attempts, and then eventually I just did it.

The needle was much thicker than what I was used to and it burned a lot more. I later learned that the placement of the needle and the temperature of the b12 can make it feel basically painless, except for the initial insertion.

But at the time the burn was bad enough that I needed to take a break for a minute and then I'd slowly squeeze on the plunger. I was a lot more sensitive to pain back then, probably because of the apathy and anxiety.

But yeah, I squeezed all of that b12 in there and then pulled the needle out. A small amount leaked out of the hole but I held it shut. I remember the needle twitched in the same pace of my heartbeat when it was stuck in there.

I felt immediate results as far as helping with the numbness and the clarity of my mind. But I don't like those big needles and never use them.

I just use the insulin needle and just inject a bunch of times to get all of the liquid into multiple sites on my stomach.

No allergic reaction or anything, and I inject daily.

1987star profile image
1987star in reply to Sammyo23

Thank you for sharing, well done you for getting so far 👏 I will get used to it all in them as everyone does. And I’m sure like many it won’t be long before I’m overly excited for my next jab rather than fearing it 🤞

I used to suffer from panic attacks with no obvious triggers. Over the years and after much reading a big penny dropped for me, a panic attack won't kill you! I had them for a few years, a few years ago now so I can say it's true 😉 Whilst they are awful to cope with, once I realised they do stop and don't harm you I found it easier to accept they were happening and that it would stop. I don't get them now thankfully.

1987star profile image
1987star in reply to Espeegee

Love this, your absolutely right, if you don’t fear the panic attack it will dissipate much quicker, and they definitely don’t kill you. I’m much less fearful of the symptoms a panic attack causes and you reminding me this sort of clicked it into place for me… I do not need to fear it 😊

I'm sure It will all go wonderfully. It could be worse, I suffer from Interstitial cystitis and for the last twenty years I've practically been unable to take any meds without it resulting in chronic bladder pain and spasms. Now that I have PA I'm stuffed! The injections will cripple me sadly, and so it looks like I'm now heading for bladder removal, just to enable me to live. :(

Please us know how you get on with yours. :)

1987star profile image
1987star in reply to Silverfox2

Oh wow, thank you for sharing this, it helps to put things into perspective for me, your actually having to be super brave and solider on knowing full well your either going to be in agony or loose your bladder. I genuinely wish you all the very best and I’ll be keeping everything crossed things go well for you.

Espeegee profile image
Espeegee in reply to Silverfox2

My brother in law suffered dreadfully with IC, he tried to carry on working but the pain was awful. After several years of trying all sorts of pain relief and Botox in his bladder, on my recommendation he went with removal and a bag, changed his life, no more pain and the slight inconvenience of using bags was a price worth paying. He's still fine ❤️ I don't know how you've lasted so long!

Silverfox2 profile image
Silverfox2 in reply to Espeegee

Thanks, I managed by sticking strictly to the IC diet, but now I have to have these injections, well now my life will be living hell. And they're be more to come as they don't just remove a bladder on your say so, they will want do do all the horrible tests they put me through all those years ago, even though at the end of the day they can't offer you any new solutions. :(

Espeegee profile image
Espeegee in reply to Silverfox2

That's just too sad and awful 😕 Patient centered care, where did it go? I think I'd be asking them, if this was you sitting here, in pain, no life and having tried all the suggestions which haven't made any difference, what would you want for yourself? To be told that you've got to run that marathon again knowing you won't get to the end this time either? Tell me kind doctor, what would be you thinking at that point? They should be ashamed that they don't listen to those who pay their wages.

Silverfox2 profile image
Silverfox2 in reply to Espeegee

I agree, but all the years I've been dealing with IC the hospital consultants have been (imo) really heartless. Standing by the "tough it up" school of medicine. It truly did emotionally scar me. Now I can't put it off any longer due to my PA and so I'm back on the cycle of pain.

Hi,

Have you considered joining PAS who can offer support and pass on useful info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

Useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Some of the treatment info in book is out of date. See BNF link below for up to date info.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

I am not medically trained.

1987star profile image
1987star in reply to Sleepybunny

Thank you so much for sharing this. I will definitely take a good look 😃

Guys I just want to share a huge step I have just taken to start what I am calling “day 1 of the new me”.

As you are all aware from my original post… I have a huge fear of taking any new medications/vitamins etc. My spatone iron water arrived yesterday… I have been staring at it. Today I took a big step and I emptied it into my class with pure orange juice and just took a sip without thinking about it. This really is big for me… as I am low in iron as well I need to take iron… I figured if I can get comfortable with taking iron before my B12 due on the 5th July it’s one thing ticked off the list and one thing to help me get better. I did not panic, I am not letting my mind wonder (writing this is helping distract me) and I feel so happy. Now this is what I need to be like for my first injection. I am still sat sipping away at it. (It’s not the best taste so can’t down it in one unfortunately)

Thank you to everyone who has taken the time to encourage me, I don’t think I’d be doing this today without all the words of strength and encouragement from you all 🥰

Hi 1987star

You've received an awesome response from this supportive forum and I couldn't add much to help. Only that I'm also 33, and (had) a severe phobia of needles all my life (just ask my mum!!) and just going to a Dr would make me very anxious. I was diagnosed last year with PA after succumbing to blood tests to try and get to the bottom of a raft of symptoms that made me feel 3 times my age. For the first few injections I asked if I could lie down and didn't look... I had no negative side effects of the initial loading doses... the side effects came when they stopped giving me the needles 😞 I now self inject every 2nd day in order to function.

I wish you all the very best... just know that it can, for some of us, get worse after loading injections when they start to space your injections apart. Monitor your symptoms closely and keep good records - it will help present your case to the Dr should you need to request more frequent injections.

All the very best!

Wow well done you for overcoming your fear of needles 👏😃 that must have felt incredible. I guess ultimately if we want our old selves back we have to face our fears.

Iv faced half my Deficiency regarding iron which I have now taken two days on a row 😂 sounds so silly but if it scares you.. it just does.

Now two weeks until I face the B12 injection. I am nervous I will not lie… but after I took the iron I didn’t panic, just felt a little uneasy for half an hour but kept myself a little busy and reminded myself “this is the new me, to a better me”. So that gives me hope the injection will go similar 🤞

My confidence is growing and talking about it really does help ☺️ thank you for sharing your fear and progression 😊

I’ve been on these injections now for years. I’ve never experienced any side effect, not even a sore arm, unlike the covid jab which was sore for 3 days.

Experienced nurses know how to give injections without you even noticing - there is a knack that comes with confidence of the nurse. Just make sure the nurse is aware in advance and you should be fine. Distraction techniques can be useful and I’m sure your husband can help with that.

1987star profile image
1987star in reply to GGourmet

Thank you for your reassurance, much appreciated 😊 yes distraction is key for me to not let my mind wonder negatively. It’s great to hear you have never had any negative effects 👏

Hi,

I usually post very detailed replies with lots of B12 info but didn't want to overwhelm you with too much information.

You could search for some of my detailed replies on the forum. Some links I post may have details that could be upsetting.

I was ill for many years (over 15) with many typical symptoms of B12 deficiency including neurological symptoms but apart from one set of loading injections my requests for treatment were refused. I had to resort to treating myself for a long period....I did eventually get some NHS treatment.

It took a long time for me to start to see improvements but eventually most of my symptoms improved or disappeared totally.

If you've been showing symptoms for a long time, it may take a while for things to start to improve. Some people see improvements very quickly.

Some people find their symptoms seem to get worse for a while after starting treatment.

This happened to me but I took it as a positive sign that my nerves were starting to heal.

If symptoms start to return soon after an injection, this could be a sign that more frequent injections are needed.

Symptoms Diary

Some on forum keep a symptoms diary which tracks changes in symptoms over time and if and when treatment is received.

"I am to have 6 b12 injections over two weeks then one every three months as a first goal."

The above treatment pattern is the one typically used in UK for those with B12 deficiency without any neurological symptoms. BNF link in my other reply says maintenance injections can be every 2 or 3 months.

There is a different pattern of treatment for patients who have neurological symptoms which has more frequent injections.

I wondered if there was a chance your GP could refer you to a NHS hypnotist to help with needle issue?

NHS Hypnotherapy

nhs.uk/conditions/hypnother...

Leaflet about Coping with Fear of Needles

guysandstthomas.nhs.uk/reso...

I came across some articles about the launch of a virtual reality (VR) treatment for fear of needles in Basildon area.

vitahealthgroup.co.uk/news/...

Perhaps your GP could tell you more about this and whether it is available in your area?

B12 deficiency can have a massive effect on mental health. I found I was far less anxious after a few months of B12 injections.

Folate deficiency can also have an impact on mental health. I hope your GP also tested your folate and iron levels.

GGourmet profile image
GGourmet in reply to Sleepybunny

Really helpful, Sleepybunny.

I sometimes think I’m a newby and forget I’ve been battling since 2016 and pretty much symptom free for 9 months. Yes, I’ve gone through and still on 2 monthly injections but through the massive amount extra doses I’ve been taking (I’m sure) I have no further neurological issues. I can go for days or weeks without eye sight problems which I think is one of the hardest to get rid of.

It can be done but takes time and loads of patience.

Oh bless you . Hear you loud and clear I was super anxious too and as people are saying in their posts, having the B12 improves soo much and anxiety for me was one of those improvements. I have my injection in my bottom ( cheek) I find it stings less. ( bit like being flicked on the arm) and no one bumps into my bottom but they might my arm. You might not notice an immediate difference but honestly one morning you will wake up and realise the fog has cleared, certain symptoms have gone and life is much better. For me I felt it was life changing .

1987star profile image
1987star in reply to Ozzy123

Thank you, yes I’m really looking forward to the fog clearing and feeling like Iv been plugged back in again 🙈 that is the best way to describe this I think. I can deal with the other things… but the tiredness is just the worst isn’t it. I have a session with my therapist today which I know will help, but I feel like I have come along way already just from speaking with everyone here 😊

Need to ask my doctor if he checked my folic levels as well. Thanks again ☺️

The shots will be the best thing to ever happen to you. The great part is it sounds like you suffer from some anxiety and there is a good chance it will help that too. I had terrible anxiety and panic attacks before injects. Now I have absolutely none!!! Healing is a process so be patient (lots of ups and downs) but you are on the right path. DO not be afraid!!! Best of luck!

1987star profile image
1987star in reply to Ctadds1

Thank you, yes I have been suffering with bits of anxiety, I’m looking forward to starting the healing process 😊 still a bit nervous but I know it’s worth it. Thanks again

We are all here to support you. Finding this forum has been an absolute blessing. Please never hesitate to reach out for help or support. The people on here are amazing!

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