Needing a hand hold

[Andypandy30]

I know you people are the only ones who understand as I have tried to explain to relatives and they really don't get it . I am waiting on my delivery to self inject . In the meantime I am going through a lot of stress in my personal life .i don't remember the last time I was able to take my dog a walk due to my leg weakness and feel I am staying home a lot more than before . Will things improve . ? I need hope x

[clivealive Forum Support]

Hi Andypandy30 you are certainly not alone in being "misunderstood" as for nearly 40 years I never knew anyone else with P.A.

I am also Registered Disabled due to a partial gastrectomy (way back in 1959) and P.A. preventing me continuing my previous employment as an electrician and I was sent away on a six month vocational training course in accountancy with 90 or so other disabled persons most of whom manifested their disabilities physically, whereas I showed nothing and I was constantly being asked "and what's wrong with you?"

Well I'm pleased to be able to say that there is "life after P.A." and having been blessed with proper treatment I'm still "clivealive" and over 75.

I hope you get on OK with self injecting B12 and if possible check what your Folate level is as these two work together to help your iron make red blood cells.

I wish you well

[Andypandy30]

Thank you Clive . I really appreciate your ur post as that is what I get . 'It's just a vitamin deficiency ' 'you don't look like there's anything wrong with you ' I really don't like to dwell on it but I am struggling as I have so many symptoms and am letting things get to me . Notably more and more anxious and weepy as well as the physical . Fighting colds and infections every other week .i really hope the injection will help me as I don't know how much more I can take .taking folic acid Clive thank you . Xx

[wedgewood]

You will start to improve once you have had your loading doses , and found out how often you need to inject to keep feeling well . Bit don’t be impatient . We are all different . Also depends how long you have been deficient . Yes one feels horribly isolated , as no one understands , including the doctors . But you have your friends on this forum . Imagine it didn’t exist! You always have us to turn to and we do understand . Once you start feeling better, life will seem so different . You will cope with life with much more confidence . Very best wishes .

[Andypandy30 in reply to wedgewood]

Thank you wedgewood this has been a year long battle . I got my loading doses last April after pushing my gp to at least try as I was symptomatic . I felt the best i had felt in years . I was me again . But due to her leaving me on 3 monthly I developed problems with my walking and this is where I am now . She has now decided to give me one monthly injections which is good but not enough for me . I am waiting on my order of self injections . I have been reading a few posts also I didn't realise anxiety and depression is elevated when levels are low . I am impatient as I know I can feel better . I'm scared re SI but need to try . I couldn't do any of this without everyone's support . Thank you all . I'm going to try and not explain everything to people any more . Iv even started to say I twisted my back .gggrrrrr ( I know I'm due my jab on tue ) lol

[wedgewood in reply to Andypandy30]

It’s been devastating for you . But life will improve once you start injecting more regularly . Inject as often as you want -B12 is completely harmless . I use I.M. Into my thighs alternately . Outer middle 1/3 where the muscle is nearest the surface . Takes less than 5 minutes ! Long needle to withdraw B12 from ampoule , shorter fine needle (25 gauge and - 1 inch long) to inject. Absolutely painless . But I take it slowly . You can watch videos . Best of luck .

[The_will_of_Jill]

I can so relate to this post Andy. Please hang in there. I started self injecting on the 9th and have noticed in the past few days that my hair isn’t falling out nearly as much as it has been for years.

Some other improvement here and there, had one really good day a few days back. It hurts when our loved ones don’t believe us 😢

xx Jill

[Andypandy30 in reply to The_will_of_Jill]

Well done to you ! Iv just ordered everything and I'm petrified but not as petrified as being so unwell if I don't ! I just can't get through to people . Unless they are dealing with it themselves they really can't know how debilitating it is . U have just started so it will take a while for symptoms to improve . Is that right ?

[The_will_of_Jill in reply to Andypandy30]

Thank you!

Excited for you that yours is on the way.

Don't be scared.. the worst part is worrying about it beforehand. It gets easier the more you do it, and it is going to help you

Yes it will probably take some time before you feel a vast improvement (I've been told). The good part is that you know it's helping your body, and the repair process is underway.

I wish you all the best, and look forward to hearing how it goes and hope you will keep us posted on your improvements.

[potter5]

Hello Andypandy, as you now know you are not alone. This forum is a lifeline and stops us feeling desolate and without hope. You are right, family and friends do not understand, they have no conception that each day you are in pain, have weird symptoms and sensations and struggle through with the fear that you may get worse as each day is different. I was diagnosed b12 deficiency June 2016 having had many symptoms for a number of years. I have been injecting twice weekly since then. Some symptoms have eased others like my cotton wool feet, spastic toes, ankles locking and banding and cramping remain. The injections will help you but recovery is slow. Neurologist I saw November 2016 said nerves can take a number of years to heal and of course all depends on length of time you have had damage. But injections prevent progression. Stress definitely makes symptoms worse so try and take day at a time. I also feel this condition cycles , one day not too bad then bang old symptoms returning. But these also pass. Hopefully very soon you will feel strong enough to walk your dog and this will help you see a way forward. Do not give up, eat well and cut out anything that you think aggravates your symptoms and make sure you get enough b12. I wish you well. Potter

[Andypandy30 in reply to potter5]

Thank you potter5 I am due my injection on tue . I get this once a month from gp . I have also ordered everything for SI and have to try this as I'm not getting enough . I am worried about my feet as I can't seem to lift them very well . It looks strange when walking . That is only one of my symptoms though . I have only realised how this affects my mood when I am due b12 . It is hard . 🙁

[SORRELHIPPO]

Things do improve, and you are right the invisible problems are difficult to explain, I know many people who are deaf complain that people treat them as if they are stupid. I have B12 injections because of Crohn's Disease, another invisible problem. I think that high levels of fatigue and pain (which go together) added to B12 probs. are difficult for others, if you have only ever felt tired, true fatigue is difficult to imagine. Also because of TV adverts etc, there is a belief pain killers can manage all pains, not true!! When I worked I could manage 3 days a week but had to sleep at least 2 of the days off. Most women thought I did this to avoid the housework!! I found that a CBT counsellor helped and a CD for relaxation and to remind me that I was a valued useful member of society, regardless of how I felt. Stress needs to be managed as it just makes the fatigue worse, as I know well, this is easier said than done. Start to take care of yourself even if it is at the expense of others, put yourself first, if others find this a problem, this is their problem not yours.

[Andypandy30]

This is great advice SORRELHIPPO thank you and something I do not do enough of . I have ordered my injections and am going to try and keep a record of symptoms and stay away from stress and stressful people who really don't care nor want to understand 😒

[eleos]

I was thinking suicide. I was tired all the time, i had blurry vision, shaky legs and hands, i could not digest anything, i could not work. Doctors and relatives thought i was just lazy since my iron blood tests were not that bad(here they rarely do b12 tests). I thought that this cannot happen for more years. I am 33 and literally i have lost my best years.

But as soon as a started to self inject i found hapiness again, i felt alive. I plan to do so many things and take revenge from the life i had. If you have b12 defficiency then you will feel better after a couple of shots. I can't tell you when all your symptoms will be gone but certainly injections are the only solution. Pills don't work

[Andypandy30 in reply to eleos]

Thank you .i am afraid of the self injections . But more afraid of never being able to function the way I did . I'm sorry that so many go through this and don't get the help and advice from kind people who want to listen and help like this forum .,x

[eleos in reply to Andypandy30]

Don't be afraid of the injections. Do them in the stomach. There are many videos and it's really easy to do them

[Andypandy30]

Thank you I have been stressing that they are safe the ones Iv ordered from Germany . Is this where you get yours ?

[eleos in reply to Andypandy30]

I am from Greece. Here they are really cheap. One hydroxocobalamin injection cost me less than one euro. The company is called unipharma and it has a good reputation with good products.

Also i haven't told my parents or anyone that i am self injecting and don't tell them because they will not approve that. Reveal what you did when you get better. My cousin saw me yesterday and said ''wow what you did? You don't look pale anymore. ''.

[Sstephens]

Hi Andy,

Sandy from the US here.

So very sorry to hear of the state you are in and really want you to know that you are being heard and supported here.

I have had PA for a dozen or more years and I know what it’s like to back-slide with symptoms and feel depressed. I recently had a prescription drug interfere with my B12 and was bed bound until I realized what had actually happened (I’ve posted a few times about it). Three months later and lots and lots of self injections and I’m feeling 99% better.

I have always self injected B12 since my initial diagnosis and find it easy and relatively painless. Here in the US, I use cyanocobalamin. A lesson I’ve learned the hard way is to make sure you are getting plenty of potassium when you are reloading, along with a good multivitamin . I suffered the muscle cramps and tremors from low electrolytes from not eating/drinking when I was so weak. Once I realized it and drank lots of coconut water/Gatorade and took my vitamins, I felt much better. Good luck to you and post when you start SI so we can support you

Sandy

[Andypandy30 in reply to Sstephens]

Thank you sandy. I am amazed at the amount of people who SI . I am due my monthly injection at the doctors tomorrow .today is a hard day . Crying a lot . Easily upset . I have a lot of stress and very little support . Which is why I use this forum . The advise is do amazing . I would not have known about the potassium until u said . My main concern is worry about the safety of the b12 I have ordered . I am very sensitive to change of any type so this scares the life out of me !

[maymay28 in reply to Sstephens]

hello Sstephens. I am new to the forum and live in the USA also. I would appreciate info on how you were able to get b12 to self inject? Were you given a prescription by your doctor. I would like the option of SI, but did not think my doctor would allow. I WAS RECENTLY diagnosed with PA and I also am hypo for thyroid. I have many digestive issues and having anxiety. I WOULD feel so much better knowing I HAVE other options. I am getting weekly injection from my doctor now, but was not given the loading dose as they do in the UK and other countries. THanks for any info.

[Sstephens in reply to maymay28]

Hi maymay28.

I was able to get a prescription from my doctor. I got my first shot in the office and was given a prescription for the rest to SI. Loading doses are standard of care, even here in the US. I would recommend you request it.

[maymay28 in reply to Sstephens]

Thank you. I will do that.

[Alessia]

What you are dealing with is a very very gruesome disease. You kniw what else it is? It is a very rare disease... That is a great thing. However it does happen to a lot of people. Due to the fact that it is rare no one understands it. They have no idea what you are talking about. People can go as far as to hurt you in many ways... I know instances where people suffering with this challenge have been labeled lazy and what not... Which is the worst thing there is. I am sorry to hear that you are in a similar situation. Hopefully things will get better. As of recently medicine can manage many diseases... I hope that things will take the turn for good pretty soon for you. God bless and your family.

[Andypandy30 in reply to Alessia]

Alessia thank u for your understanding and kind words . It is hard . X

[Hidden]

Never mind being scared of self injection Andypandy30, it is, as others have said, very easy. Once you have done it you will wonder why you were so anxious. I do know you will still be frightened of it, no matter what anyone says, until you do it for yourself and realise why we are all saying how easy it is. And Just think, once you have done it, you will be able to look at anyone who has scoffed at your invisible illness and think how much braver you are than them. You might well try asking them how they would view having to inject themselves every week, or fortnight or month: the answer will be 'I couldn't do that' or 'I don't know how you are able to do such a thing'. You will be able to give a casual wave of a hand and tell them 'If you have to, for staying alive, then it is nothing, a minor inconvenience, and 'I feel so much better after doing it.'. You will be one of the different ones, the ones who aren't afraid of self injection.

[Andypandy30 in reply to Hidden]

Thank u for saying that . It gives me strength on a very bad day .on reflection you are right . I am brave and I am fighting for my life . I appreciate your kindness x

[eleos]

I was afraid of the bubbles . What if i missed one and i die? With subcutaneous injections there is not such fear. Really you can't make a mistake.

[Andypandy30 in reply to eleos]

Yes eleos my fear is the brand being safe then the actual administering of it . I have my gp app tomorrow do I go ahead while I am waiting on my si ones to come . I feel I need it today x

[Hidden]

How about asking the practice nurse to let you do it with guidance - you could plead it will remove you from needing their valuable time just to do an intramuscular injection.

[Cherylclaire Forum Support]

Couldn't get anyone to teach me, watched videos (can be confusing) but mainly took advice from people on this forum who I trust, asking questions and discussing any problems that came up.

It has taken me a long time to improve and I'm not done improving yet, but I am noticeably on my way ! I inject every other day, record all symptoms and could see a marked improvement by about week 4 or 5. Everyone has seen this too and commented: partner, GP, nurses, friends, family, employers. It has taken 15 months to get back to work, even on a phased return. I intend to keep on improving until I feel like me again completely or until I cannot improve further -and then I can work out what is a comfortable maintenance level for me. It's certainly a downward slide on 1 every 3 months, and a slower decline on 1 every month. I don't believe I had any other sensible option available.

It is frightening to inject yourself, but it is more frightening to keep getting worse.

We are all different - so glad about that ! - and I hope you can find a way to make yourself well. Don't lose heart.

[Andypandy30 in reply to Cherylclaire]

Thank you xx

[Sleepybunny]

Hi,

There was a time looking back when I think I needed an invalid buggy although didn't get one.

It was hard for the people close to me to understand how weak I was and how much discomfort and pain (both mental and physical) I was in. I was scared at the deterioration and also upset by lack of understanding from doctors.

I truly understand why some people become desperate when suffering b12 deficiency.

Things improved a bit for me when I had a set of loading doses (B12 was below 140) but without a confirmed diagnosis I did not get any other B12 treatment as other b12 tests were over 300ng/L and IFA test negative. I also improved a little when I cut out gluten (Coeliac test negative).

I was sadly ignorant of the damage B12 deficiency can cause and ignorant of lack of knowledge of B12 deficiency amongst some doctors. I learnt a very hard life lesson which was that the only person who was going to help me was me....

I spent many hours with Doctor Google and came across websites and books that dealt with B12 deficiency and a lightbulb went on in my brain.

I exhausted all possibilities at the time of NHS B12 treatment...I really tried...so many times....discussions with and letters to all my GPs, with several neurologists, with other specialists to no avail and finally realised I would have to treat myself. It took many weeks to see any improvement.

I have had a lot of support from the PAS forum which kept me going when I felt I had had enough.

I did eventually get some NHS treatment and many of my symptoms have either gone or improved. I now have a life I can enjoy although it's not quite the life I was expecting to have.

It took time for me to adjust to the changes .

[Cherylclaire Forum Support]

Any improvement yet, Andypandy30 ?