Sadly after 4 years of really helpful advice from this group I feel it’s time to leave as I have been reported for inappropriate posting. Having used the word wow in surprise to a rude comment yesterday and in return being told ‘You’re 72 and ‘who asked you(me)’ I can only think this is the reference.
I really don’t need this added stress
Thanks to all of your invaluable help over the past few years. Take care all in your journey with B12d
Sounds wrong??Do remember Wedgewood had a troll causing a huge problem.
Try and pm an admin .
Hope a solution / explanation
You don't need extra stress
Yes I do remember Nackapan but I think this is in relation to a post that I replied to yesterday relating to diet which has since been ‘cleaned up’ and quite rightly. As you know stress doesn’t help so think I’ll just save a few links from here before I remove the forum from my favourites. Thanks for your ever helpful posts as always 👍🏻
stay. Ignore the idiots. Don’t let them win. You are better than they are. Stay.
Thank you, I really didn’t expect responses but it’s nice to know some care. This B12 journey isn’t easy is it?
Hi,
I'm sorry that you are thinking of leaving but please think about contacting the Admins before you do.
Link to Admins
healthunlocked.com/pasoc/me...
Thank you Sleepy Bunny
I am so sorry to hear of this incident but pleeeeeease consider Nackapan's and Sleepybunnys advice before deciding to leave the forum. 😘 💐
Lurcher-lady I have really really appreciated and valued your contributions. 🤗 So please take the advice above and check with admins.
This forum is about support in whatever form that takes and from my viewpoint you need support now as clearly you are upset. You have supported me in the past and I feel upset for you.
I really hope we don’t lose you and there is a happy outcome to this. 🤞🤞🤞🤞🤞
Thank you Wwwdot it’s appreciated.
Please reconsider and contact admin , really hope you stay😀
Come back! We'll miss you!! We need more of 'your sort'...
Thank you it would be good to see useful informative posts, just won’t risk taking part just yet.
You can remain a member but not receive the posts. I did just that on HealthUnlocked for years. Then you can access the site anytime if you fancy a read.
Might be a plan Rogergee. I’m all for a good debate but personal attacks on one’s age are always upsetting. I’m quite aware of advancing years but don’t need to be reminded in a derogatory way. Guess I’ll just stay young at heart ❤️
Keep doing you Lurcher-lady. I don't know what the comment was, but 'wow' is a reaction I sometimes make to rude, overbearing, generalising or offensive comments online. Mostly, now, I just move on with a note to self to avoid their content in future.
Have a great day.
Oops! Rogergee I often use “wow” as a compliment - of awe - of amazement - I hope I haven’t caused inadvertent offence in any of my replies! It’s hard keeping up with the fashionable interpretations of commonly used expressions!
I know how you feel Lurcher -lady - I was banned for a month for making a sarcastic comment back to someone who’d been causing untold stress to many of us by their nitpicking.
I was eternally grateful for the support I received until they were eventually banned from the forum !
Thank you Polaris. I think what shocked me was the fact that I’m generally mild mannered. I’ve moderated on other groups so never been accused before. I guess enough rope will prove a point. I will stay but not receive mails and see how things go. Take care
So glad you’re staying. Being a sensitive soul isn’t easy - find myself saying “All things pass”, more and more these days…….
Please stay !!! I can't imagine why anyone would report you !
Its upsetting, I'm the sort who takes everything to heart, but you are very highly regarded by me and I know by everyone else here - so don't go !
Best wishes from me & Rio greyhound xx
Thank you so much Ghound I thought I would just be sneaking away quietly. Take care
Lurcher-lady - I'm taking it that you are still here to read this as your name is still on the list.
This forum only works so well because the mix is vital to finding solutions to living with a variety of changing symptoms where the general medical concensus is to treat us as all the same. Although some GPs are well aware that this isn't working for all of us, some will continue to undertreat/refuse to treat with a harmless vitamin.
Everyone here could be the one person that says the one thing that makes the difference. Even if just a word of support at the right time. Age is a plus in that regard: experience helps. You're 72, and I would ask you.
We only have each other and every leaver leaves a gap in the chain.
Stay. Please.
....Did you read WiscGuy 's link on yesterday's post ?
It's about Dr Judith Herman, who has returned to her career, after 25 years of pain, at the age of 81.
Honestly, I'm not just fishing for a reply. Just keeping the door open !
Haha, well I worked for Age UK keeping people in their own homes for as long as possible………until I became eligible for the service. I stayed with 2 ladies who didn’t want to change to new carers and still work privately as a carer 2 mornings a week which I love.
Wonderful ! Well done for staying. Really not easy to do. I was off sick for 4 terms, then back on a phased return - but at best, managed to get from one day a week to two days and often struggled.
I applied for voluntary redundancy when on furlough - so quite lucky that I stayed. But that really was the end of my career. A relief.
Without this forum and the encouragement to self inject (as tablets were doing nothing) I’d be retired now too.
Good reason to stay, don't you think ?
Plus: new NICE guidelines due out in November - I know you're going to want to have input into that discussion, as much as we will want to hear what your thoughts are.
Many thanks again, I’m overwhelmed 😳
🤗
Thank you again 😊
I’ve left the forum on a couple of occasions when I’ve been especially vulnerable and just couldn’t cope with the critics..I really regretted it because I lost the “friend” base I had built up and never quite got that back.. I still have very fragile days and don’t post so much now,some people can be just downright selfish and not make allowances for age,brainfog,injury, lack of confidence etc all regular things many of us suffer from.
It’d be lovely if you stayed so as suggested just pop in and out as and when you want to and just post as and when you want to,I’m sure many of us have resigned ourselves to doin* that now,it works for me..take care, we are here to support not hurt xx
So very true, thank you. My friend reminded me that people who are rude and hurtful on a keyboard would be less likely to be so either on a phone or face to face. I know what you mean about the friend base, we need this when feeling fragile in a way that even family don’t always understand. I’ll stay ……… at a distance for now.
please allow me to apologize on behalf of rude people. I know during the height of my illness I was less than kind to many people and I won’t have the opportunity to apologize to all of them.
I’m sure you’re not intentionally rude to anyone. PA /B12d can make you feel pretty miserable at times as we all know, especially when we can’t see light at the end of the tunnel. Hope you’re feeling better now 😊
thank you I’m feeling much better now. Just cringing looking back at my time before I was diagnosed when I was kinda crazy
I think most of us can relate to that. I look back and think ‘was that really me’ and worry about the fact that if I’d listened to my GP I would be pumped full of antidepressants and steroids by now 😳 Scary thought 😳
I would be too.Started to doubt my sanity told so many times it was stress and anxiety .
Wel I truly was when not listened too.
I knew I wasn't clinically dioceses though.
I even paid the prescription twice getting antidepressants nevef used.
Four times paying for other drugs not all tried!!!
Diazipam, amytripyline, serc, sertroline ,HRT patches, a beta blocker. A drug fof vertigo antj sickness, propranolol,
Many more I csnt recall at present.
Once told nothing coujd be done for me if I won't take anything !!!
I wax tearful on that occasion in disbelief.
But managed.
When you tell me what you are treating I will try another.
That wax the 'good gp'
Who quickly took me off 2 things that clearly made me alot worse.
Meanwhile trying to reduce my b12 injections!!
I also remember clearly being told they haven't s magic wznd on here by someone.
Never thought that.
Explanations
Of symptoms.
Even if cause not full understood.
This trend of always thinking there must be something else causing such severe symptoms.
Good to rule things out.
Not good drugs on trial and error with no proper understanding.
Then there's thd DIY 'responsibility '
My standard response is research has not caught up yet.
Yes you are missing something.
Meanwhile please do not deny me the only thing that has helped .
A clear case as not taken everything prescribed that would've muddied the waters .
We all need trust and confidence and some patience .
I like many many others have given plenty out in my work of old.
You Lurcher - lady have made us all think of the purpose of this forum.
I was constantly rowing with strangers - on buses, on the tube, in shops, in the library (!), at the surgery, at the chemist - really not fussy who. All locally, as I was unable (luckily) to get far, but that would make it more embarassing if I ever remembered exactly what I had said and who I had said it to. That is unlikely and so I can't apologise. It was out of character, but I've had to let that all go.
What my mum always said to me, when I praised anyone to her, was "....But have you told her that ? " A champion of the unsung hero, my mum. So I always make sure to do that.
Along the way, there have been a few people in the medical profession who have really helped me, not given up trying, fighting my corner when I couldn't do that, and who I grew to like and trust as caring individuals during what was a very difficult time. I ensured that they knew what a difference they made to me - and my mum would not have wanted it any other way !
So I'd say please don't feel guilty about what you are unable to change - but ensure that you let people know if they have helped, now that you are feeling more positive.
People come and go on this forum, as they improve and need less help, or go back to work and haven't the time. I'm glad about that. I like to think they are out there being busy. But Thrones12 - that just means more newbies arrive in need of friendship (even though they may be a bit of a handful at first, like me and Emmers5 !)
That’s incredibly true about letting people know they’ve made a difference. Your Mum sounds like a very wise lady 😊
She was.
At her funeral, most of which went by in a blur, the main word I heard mentioned over and over again was "kindness". I was very lucky to have her for my mum and am immensely proud of her.
I was so nasty. Especially to my partner. I'm so suprised he didn't leave me. It was that bad. It was amazing how quickly I regained my usual 'sunny' nature after starting B12 supplementation.
My partner kept telling me to go to the doctor. He said 'there's something very wrong with you'. I refused - I just couldn't be bothered to do anything. I wonder what would have happened if I had. I suspect I would have been fobbed off with antidepressants and would now be hooked on them.
BTW. I self diagnosed PA after having a seizure and remaining unconscious for 30 minutes.
I was also a handful to my partner. Nothing personal, nothing at all personal - in that it wasn't even me, it was purely the deficiency. Must be quite hard for them, too.
I was offered antidepressants about 4 times at the beginning. I had to keep insisting that I wasn't depressed, that it was all the illness. The anger, needless arguments, the craving to be left alone, for silence, the paranoia, the anxiety, the fears and doubts, the sadness and tears, the speed at which I changed; none of these emotions were remotely "me" any more than the loss of teeth, hair, muscles, or any energy was me. Now why don't GPs know that ?
A self diagnosis after having a seizure ? Good shout. Back then, I wouldn't have known a B12 from a banana. What was the assumed cause of your seizure according to medical professionals at the time ?
I love all of your responses and that is why I so very much appreciate this forum! Also if there are any phone customer service folks out there I’m sure I owe all of you an apology from my dark years!
It was at the start of covid. Very unsatisfactory treatment with no diagnosis. I was out for over 30 minutes but they told me I had just fainted. They weren't worried that I couldn't walk or speak properly. They sent me home without even giving me a brain scan.
Just fainted . For goodness sake
There's always a reason
Too much reliance on going back going back.
My daughtef 'just fainted ' too many times.
When it happens I think 6+ times in one day .
With me counting how long between responses on phone.
Too far to physically get there.
I got her to get help if she didn't I was ringing sn ambulance. As she begged me not to !
Shed been 'turned away ' so many times she really thought it woujd be a waste of time .
Just so awful this is happening alot.
On that occasion she waxs told to go to the surgery !!!
Of course couldn't get there 🙄
Fortunately a good Gp read into that .
Turned up at hef house.
He called the ambulance!
So listen to your mum or dad or what your mum/ dad would say if alive !
😳😳
What im now amazed by is when family or friends say .I was blunt.
Irritable
Not me
Response to their problems slower
Questioned things even more.
Why did noone pull be aside and help????
Rather than assume 'hormonal'
Menopausal and feel it a good exuse if rude to not see me ect
Adding to paranoia
All Hindsight
Answers .....
My answers ....
I'm the one that does that ,not them !!
Even a very close friend said I was 'a nightmare ' but thought anything but I was... perhaps ill .??
All Hindsight.
Also told I'm too scary to confront afterwards.
I don't think so 🤔
Your mum is right ;
Give the person praise.
Being kind.
I also think if nothing to say positive say nothing.
Although this fails with me with superficial things as I instantly snap oh you hate it l
Too good at reading people/ body language at times ..ha
Also to be pleased for another even though things can be tough personally.
Alot can't seem to do that .
Age definitely had its advantages.
Wisdom .
Focussing on the positive things someone brings - to your life, to the forum, whatever - seems a healthier way to be. The negative people/ comments are best ignored and not given too much importance.
But easy said when you are well.
I do remember coming home on a bus and telling a man to get his elderly dad to stop shouting so loudly into his mobile phone that it was making my ears bleed. Or so it seemed at the time. He was at least three rows in front of me, so looking back, I'd say that was probably me !
Also, when that person is in a position of power (as medical professionals are), there is little else you can do but confront them. Politeness can kill you - I was glad to go with my mum to her appointments, just to ensure that she got heard and that she understood them and heard them too. Many of her generation too polite to even tell a consultant to speak up or slow down !
In an emergency, you'd want a bulldog with you: yes or no ?
[Just thinking: it must be so much easier to put the phone down on a patient than it ever was to ask a patient to leave the surgery !]
No, I am not as kind or polite as my mum. But I remember her words - and try to ensure I give praise where it's due.
Interesting that you said you were used to deciphering body language and good at reading people. Others here have also mentioned being sensitive in that way. When at my worst with B12 deficiency, I lost the ability to read faces - even the faces of those closest to me. I could take little from their intonation or choice of words, looked to gain something from their facial expressions - nothing !
Thank you for posting it was helpful to me as were the replies. I try and use the I word and links to others work to avoid hurting anyone. I do get frustrated when some respond dogmatically there is A answer and I am wrong.
I found that sometimes I do not use the I word and 'cheat' and write 'some believe'.
It will be less effort for me to use 'I' statements now. Again thank you.
If there was one answer to this condition, there would be no need for this forum at all.
And, assuming that the one answer was the 6 injections then one every 3 months and everyone's peachy, we would probably never have got to speak to another person with this condition.
Sadly, no one answer.
So Martyn Hooper - thanks to you, we have somewhere to come to with the aim of helping each other to find a way forward.
Better together, WIZARD6787 . It certainly helps to know what is or might be B12 deficiency related by finding others have experienced something similar. The NHS list of symptoms does not begin to chart how complex our real-life experiences can become. Maybe a GP or two, having nagging doubts, might check with the PAS, or Tracey Witty, or read accounts on this forum - certainly all three have been life-savers.
And doctor Chris Steele from This Morning TV had a think about how doctors weren’t listening to patients and asked them to take heed.
Dr Chris Steele wrote the foreword for Martyn Hooper's book.*
It started like this:
"During my 45 years as a GP, I have often felt uneasy about the way in which pernicious anaemia is diagnosed and treated. This uneasiness has troubled me when initially investigating patients who complain of tiredness....."
He cannot be alone in that.
At the end, he said "Every doctor should read this book. Most doctors will learn something from it."
When I was first ill, I went to a bookshop, bought a copy of this and went straight to the nearest cafe to read it. I started with the first appendix: Martyn's own story. It was then that I recognised myself there and cried. A relief to know that I wasn't alone.
* What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency": Martyn Hooper MBE
I was surprised at how B12D manifests itself so differently with each person. I know enough about the complexity of the neurological system to not be surprised at all.
.....and so, presumably, would those in related consultancy roles.
It completely threw me when a neurologist, very engaged and interested, very patient, told me he thought i had a case for more frequent injections - but he did not know much about B12 deficiency !
well, it was relatively early days, and I had been warned by forum friends.
Still.....
20+ years on Lansoprazole-now paying the price.
Toes and feet cramping
blood results and one mthfr variant - help please 🙏 
I am new and desperate for help!
