Feeling lost...but finding my way thanks to this group.

[Sharnbarwick28]

I have a confession to make😳 I dident mention it in my first post as I am so tired of explaining myself. But with all your kind words and advice I feel able to let you all in what really happend. I have attached a letter I have sent to my local mp explaining my case. Just for the record this nurse told me when giving my results over the phone that b12 deficiency doesn't have symptoms.😳 So very sympathetic. After the incident I went to the chemist next door and had a mini breakdown to be told the same nurse had accused one of ther staff of being threatening and have put a complaint in against her.. I feel well and truly stitched up. But on the up side have I have finally got into a new practice . Hope this ones better. Sorry it's like my life story😳 I have been recently diagnosed with pernicious anemia buy doctor X on the 24 march 2017 at the selston surgery. After diagnosis he prescribed a loading dose of five b12 injections one a week for five weeks then a injection every three months. The N.i.c.e guidelines state sixe loading doses every other day then once every three months. I brought this up with doctor X to be told I should find another doctor as patient doctor trust was a problem .but he agreed to do the loading doses. He also said that b12 is addictive and i should start at a low dosage as I will have these injections all my life. I cant find any documented evidence of this and the pernicious anemia society can't find any either. I booked my appointments and I was on my way home. The first appointment the nurse asked me for my b12 vile that I had been given a prescription for and preceded to lecture me on what the computer screen said.(doctor X did not give me a prescription nor did he explain that I needed one) I asked what I now needed to do and that i needed the injections as soon as possible as pernicious anemia is very serious and my symptoms are getting worse. To be ushered to the door and told she was only trying to be helpful in a very annoyed tone. I then turned around and said I don't think you are being helpful . She then started shouting that I was being threatening towards her. I burst into tears and was took into a room by the practise manager and told to leave the practice as the nurse had a witness that I was threatening towards her. I did not in any way threaten or be aggressive to this nurse I just asked questions. (The said witness was in another room.) I asked to meet with the nurse to sort any misunderstanding out. But to no avail. I also asked for her written statement of what I was accused have done .again to no avail. Doctor X then came in agreed to give me the injections. Then said I left my prescription on the floor . But nobody contacted me to say i had left it or that I needed it. The next appointment I took a chaperone with me and had no problems this was a different nurse and she said the next two appointments was on her screen and was with her so no need to worry. On my third appointment I was again took into a room and told my appointments were cancelled and I my husband and two small children are not registered at the practice anymore. I complained that dr X agreed to do the loading doses. He came in and gave me my shot of b12 . He did not speak directly to me and would not look at me . I am very distressed as to how I have been treated not only do I have pernicious anemia I am now in limbo for someone to administer the loading dose injections that are due. I can't get a appointment for two weeks for a new doctor I have rung 111 but they cannot help I have rung a&e and they cannot help either both has said it's dr X responsibility to administer the injections. I have rung dr X who refuses to talk to me and the practice nurse has refused to help. I am feeling very distressed and isolated that I have finally been diagnosed after weeks of persistent doctors appointments and to finally have the treatment in place to then be chucked out when I need medical help the most. Without b12 injections my body can not repair the damage that pernisas anemia causes and can in some cases be irreversible. So it is vital I receive the treatment asap. Yours sincerely Sharn barwick I would like Gloria de pero to act on my behalf to try and get the treatment I deserve.

Sent from my iPhone

On 24 Apr 2017, at 13:25, ANDERSON, Lee <[e-mail]> wrote:

Lee Anderson

Office Manager For Gloria De Piero

MP For Ashfield and Eastwood

Office Details

8 Station Street

Kirkby in Ashfield

Nottinghamshire

NG17 7AR

Tel: [phone]

UK Parliament Disclaimer: This e-mail is confidential to the intended recipient. If you have received it in error, please notify the sender and delete it from your system. Any unauthorised use, disclosure, or copying is not permitted. This e-mail has been checked for viruses, but no liability is accepted for any damage caused by any virus transmitted by this e-mail. This e-mail address is not secure, is not encrypted and should not be used for sensitive data.

[Gambit62 Administrator]

I am going to edit this post to remove specific names - as this is countrary to HU policy

[Sharnbarwick28 in reply to Gambit62]

So sorry I dident realise.hope I haven't caused any problems.😢

[asker2 in reply to Gambit62]

What appalling treatment you have received ..it beggars belief .

[clivealive Forum Support]

A tragic tale of woe Sharnbarwick28 I hope your new practice treats you better and wish you and your family well.

Oh and by the way the both the NICE and BNF Guidelines recommend that if you have P.A. and are suffering neurological symptoms to administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

[Sharnbarwick28 in reply to clivealive]

Thanks for the info I will defiantly put that in my complaint. I get so bogged down with facts and can't think straight. Not feeling very good the past couple of daysThank you for being so kind😘sometimes that's all you need . Xxxx

[clivealive Forum Support in reply to Sharnbarwick28]

I was 13 years between gastric surgery in 1959 at the age of 17 before I was eventually diagnosed with P.A. in 1972 by which time I was a walking "Zombie".

However I'm still "clivealive" at the age of 75.

Ask your new doctor to check your Folate level please

[Sharnbarwick28 in reply to clivealive]

I will do. I dred to think what you went threw must have been emotional and physical torture. Thanks again Clivealive still kicking ass at 75 .xx

[Hidden]

I cannot believe medical staff in this country. They talk to us as if we're something on the bottom of their shoe. ( I'm sure they're not all like that but it seems people with persistent problems seem to meet all the rude ones)

It's not you---- it sounds to me ( wearing my psychologist's hat) that this nurse may have been threatened by a patient in the past so uses that to get out if any awkward situation. I think what is more likely is that she is not very good at her job, liked the "old days" when patients didn't ask questions and would probably rather not deal with the public!

Good luck with your new dr. You will feel better in time.

[asker2 in reply to Hidden]

I trained in the NHS 1960/63 with the "old Matrons..this would never have happened then Never !

[Cherylclaire Forum Support]

I come to this place for the kindness and helpful advice, Shambarwick28. A lot of people here have either been through what you have or something similar, and those who receive proper treatment for their condition and individual set of symptoms know how lucky they are.

I have been, at different times, in both camps. With so little research, so much variation between us all, and so little variation in the treatment guidelines, it seems some GPs are forgetting it is up to them ultimately to work out what will make you better or worse using their own judgement by paying attention to what you say, how you are, keeping up with current thinking and developments and listening to the likes of Martyn Hooper and Tracey Witty who have stepped into the void through desperation and deserve respect for continuing on to help thousands of others like you and me. We can get better, we will get better, and we have safe places because of them to talk to people who genuinely care- and that's how I know we'll be okay.

I did shout at the head nurse in my surgery (not threatening just exasperated)- perhaps she is aware that B12 deficiency has some symptoms: unlikely that she knows that these include mood-swings, impatience, crying and getting easily upset, leaving us extremely vulnerable. What appals me more is how very few symptoms are recognised as being related to B12 deficiency by consultants who represent "the end of the line" for us in terms of adequate lifelong treatment- with power also comes responsibility -and refusing to recognise research/ pretending to know better is absolutely beyond forgiveness at this level. Perhaps if they had had personal experience of this awful condition, they would be as caring to us as the people on this forum. One would hope.

Meanwhile, hope you find a friendly GP that you can trust with your health and that of your family.

[Sharnbarwick28 in reply to Cherylclaire]

Thank you for your lovely comments Cherylclaire. 😘 It's nice to know other people have experienced similar scenarios and it's not just me. It really shouldent be this way should it? How did you get on eventually? How is your current doctor.and more importantly how you feeling Xxx

[Doubleblank]

Reading the posts on this forum is like discovering a new world, I had no idea people were being treated with such a lack of compassion and understanding!

But know that we are angry on your behalf and hope that your new Dr. will be more understanding of your needs.

Good luck

[Cherylclaire Forum Support]

Never just you, Sharnbarwick28 , so although you wouldn't wish this on anyone, still strangely comforting, particularly when you start doubting your own symptoms, faced with a wall of professional disbelief, just come on here and check- you will find it's mainly a whole chunk of very relieved people going: "yes, so do I !!" or better still: "I used to suffer with that, and here's what I did ...". They will also let you know if it's something to worry about or not, because going through this type of stress alone really can't help matters.

@Doubleblank is right, it is like discovering a new world- and an essential counterbalance !

GPs tomorrow, will let you know.

[asker2]

I was told to pull my socks up by a GP when I was unable to walk properly and had all the nasty symptoms and so much depression.I know you will find kind compassion here I have and believe me as a retired nurse we don,t know it all we really don,t I have learned alot since being in this group..and am starting to self inject B12 asap ..All the best xxx

[Cherylclaire Forum Support]

Expect as a retired nurse, asker2 , that you made a better job of it than I did at first ! Seemed that if there was anything to hit on the way in or out, I managed to find it. Checked with some very kind people here and improved my technique- or just perhaps gained confidence?

I've now been self-injecting every other day since September, and everyone has noticed improvements in my memory, behaviour, moods, general appearance and wellbeing. Can certainly do more in a day and don't need a nap in the afternoons at all.

Symptoms still there, but reduced in strength and frequency, and finally feel able to go back to work after 15 months off. Employers have been really thoughtful about a phased return, starting with one day a week and no rush-hour travel ! Was beginning to think this was not going to be a possibility for me. Even if it does not work out, or I have to permanently reduce hours, I am still improving and have nothing to lose by trying.

I hope this reply finds you well (or at least better than you were) and that it gives you some hope regarding future. Very best of luck and will let you know how it goes. Expect it to take a while, keep going.

[asker2 in reply to Cherylclaire]

Thank you Cherie claire I have a shot this Tuesday and an appt to see my GP which I am dreading in a way they really don,t like us to be too nosey about what our bodies are up to are they (wink wink ) I am going to ask for copies of my lab results to see how I can plan future treatment ..I know I can go to the DOH if he refuses but I hope it won,t come to that ..Good to hear you are progressing and I wish you well with returning to work

[Cherylclaire Forum Support]

Well, asker2 , how did that go ? Had my fingers crossed.

Getting my "phased return" certificate tomorrow ! Initially, one day a week and travelling outside of rush-hours, and hopefully, if all goes well, increasing to F/T again.

Hope you have also experienced some change in fortune lately.