Strange praise

[Nackapan]

I went to the surgery today to have an IM b12 injection. The nurse was very animated and praised me for going 6 weeks.

Got me thinking why are we given the impression weve done so well with a larger gap inbetween Injections? Would it not be more appropriate to ask if we are functioning any better?

I'm actually having injections every 6th day . I've got a prescription for 2 weekly which I pointed out to the nurse. For some odd reason it really deflated me. If I actually felt well I wouldve quietly smiled to myself. The surgery felt alien and for the first time I reflected on how often I've been there in the last 2 years. Where has all that time gone?

I'm having more injections as had been on 2 weekly for a year . As we all know it's a lone battle to reach the best we can to get on.

One bonus is it really did not hurt today . All surgeries should be giving the injections . There really is no excuse.

[MissKota]

In an ideal world we would be treated as individuals, as in given individual treatment plans, instead of a generic one size fits all. But sadly that would take time and money, the two things being taken away from the NHS

[Nackapan in reply to MissKota]

We should be given individual treatment plans .in the long run it would cost less . It takes good clinical skills and a double consultation time and if the plan is correct only a review needed every 6 months. As it stands it's a revolving door as you never move forward so keep going back.

[wedgewood in reply to MissKota]

But the actual cost of an injection is so low . I reckon it costs me about £1.50 for the ampoule , needle and syringe , and then for the NHS with their purchasing power, it would be much less . Then the 5 minutes of nurses’ time?( they get such huge salaries, don’t they ?!) Think of the money saved through not having to treat the health issues that result from under treatment . Also, even the nurses’ time could be saved by training patients to sub-cutaneously inject themselves , as is the case with insulin patients , who are trained to self-inject .

[PhilAB]

After a long battle I got my doctors to agree to 2 injections per week, which was strange as one the sheet I was given when diagnosedwith PA it said every other day. Although, I now self inject the other 5 days as I believe after many years of deficiency this was best way to heal.

I was in this week and the nurse I see alot said how long are you going to get all these injections? She then said she never knew anyone have so many.

What makes it even more bizarre is she has PA herself.

[Nackapan in reply to PhilAB]

Oh goodness . Yrs well I've not got a diagnosis of PA. G.p said dietary(which it clearly isnt) yet I eventially got every other day reinstated after loading doses as I put up a fight and nothing else was found wrong with me . Then went at my own pace but once reduced to 2 weekly that was that. No testing for PA . Another doctor at the practice said injections fie life Another said they should be stopped and si it goes on.

Ine neuriologust said u was addicted. Anther having OA himself said it appears more reserch is needed. He read nothing that was enough to believe tablets could be as good He personally needed more that 12 or 8 weekly . He also said it appears some need a very high frequency .However he still found it difficult to acknowledge such severe symptoms as he dudnr have them!! So all very personal. I didnr realise you could have so many a week until I joined this forum. I was trading anything to try and get the right treatment. Do do you do okay on daily injections now?

Si

[PhilAB in reply to Nackapan]

Only been doing daily injections for 2 and a half weeks now. I was on 2 per week but after speaking to some PA sufferers and researching I decided 2 per week not enough to heal all the damage I had. I plan on doing 30 days SI then 30 days EOD.

I cannot believe how ill i have been for 5 years, lost my dream girl, left my dream job as I was suffering so badly. I cannot tell you how ill i have been. And the lonliness, anxiety, depression and paranoia hits me daily like big waves.

[wedgewood in reply to PhilAB]

We all feel for you philAB .You have the forum now , and you will eventually recover . Keep us informed of your progress , and don’t get dispirited if it takes longer than you thought . You are now on your way👍👍👍💉💉💉

[PhilAB in reply to wedgewood]

Wedgwood, you have been amazing and have helped me so much. I appreciate your advice and guidance so much. After a slow decent into madness or hell take your pick, at least am in control over my recovery. After experiencing anxiety, paranoia stress, depression, as well as ADHD like symptoms for over 6 years whilst I have been deficient i think I would make a good counsellor if I recover.

P.s I have a whole raft of other symptoms, but i cannot leave out the brain fog which has been and still is my arch enemy.

[wedgewood in reply to PhilAB]

But she may manage well on 3 monthly injections . Many PA patients do , but they don’t come on this forum , because they have no need . My neighbour has P.A. , and couldn’t believe that I needed weekly injections , because he is fine on 3 monthly . Your nurse , like many medical professionals probably has a poor understanding of P.A. We all know about that , to our cost . And the instructions that came from “above “:for P.A. patients to take tablets during the pandemic , just underlined for me how very little progress we have made , when I foolishly thought that we were getting somewhere slowly . It was a real shock for me which put us back into the dark ages .

[PhilAB in reply to wedgewood]

She has an injection every 2 months, but she even admitted to me that she struggles in between with fatigue. I advised her that she may need to have injections more frequently. I said many people inject monthly or weekly or daily. She told me she can't self inject. I was gobsmacked as I said you inject random punters like me why not yourself. I have told her about the site and explained guidelines but gets me nowhere.

[wedgewood in reply to PhilAB]

Well you have done your best . You can do no more .

[Sleepybunny in reply to PhilAB]

Is the nurse a PAS member?

I'd be tempted to hand her a copy of BNF info.

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

[Nackapan in reply to Sleepybunny]

Believe me ive tried.

I've taken posters in that never went up.

I've said about PAS and this forum about not being alone with alot of the symptoms that I was told had nothing to do with b12.

I've been asked where I get my information from!! Ect

This nurse is retiring . So as weary literally and emotionally from her remark a good change of subject. I said how the NHS as mucked mine up from losing the bid ect. She got animated again and said oh....so you aware 'how the system' works or doesnt . So I did get in how it certainly isnt working for b12 deficiency and PA .

I didn't challenge her about the inappropriate praise as I like the women and she wished me well .

The receptionist however gave me a scowl as usual as I talk and take longer . On one occasion even after booking a double appointment as told to by Gp she actually rang the Gp I was in with to check she was 'okay' . The Gp told me she'd had a metaphoric slap.

Makes me laugh I'm not discussing the weather or pensions 99% of the time in there. That receptionist will perhais learn that many conditions are complex and need a bit of time and double appointments shouldn't be tried to be blocked . Everyone needs a bit if respite from the constant monotony of work.

[wedgewood]

I’m afraid it is yet more evidence of the ignorance of the medical profession that surrounds P.A. To praise you for going 6 weeks without an injection ,seems to indicate that you must have control over how often you need an injection, and that you have put in a mighty effort . It’s ridiculous !

[Nackapan in reply to wedgewood]

Totally ridiculous and that's probably why I felt so deflated at the sheer ignorance. Apart from not seeing 'on the screen' I'm prescribed 2 weekly to sI .

I know they cant remember everyone but I've been so so often. I arrive in a big hat and tinted glasses. ' a problem patient ' I guess too. Why I felt upset?? I think praise was more in order if any at all for getting on with sI . Trying to reduce visits ect. Enduring daily ongoing symptoms. Od dear. At least we all 'get it'

[deniseinmilden]

Wonderful post which sums up the whole situation! xx

[Cherylclaire Forum Support]

Don't tell them how flat you feel- they'll be getting the antidepressants out again !

I used to get "Oh yes, you're the one who gets an injection every 2 months" when I corrected them (again) about the next injection appointment. You can imagine the tizz when GP had me reloaded - at 2 a week !

I'm now relieved that I no longer have to worry about their personal opinions concerning my treatment frequency.

It's not like you want a pat on the head or a dog-biscuit, but a bit of encouragement, acknowledgement about how hard you are trying to get well, wouldn't go amiss.

luck and love to you, Nackapan , for working so hard to find answers -and for all the support you have given to others here.

[Nackapan]

Thank you

You made me smile 😀about the' pat on the head and a dog biscuit. Yes i remember too the tizz when every other day were re started after my 'sit in'

So true about actually saying g how you are feeling....wouldnt dare after all the antidepressants I've turned down.

I've had ...."oh you're the one that isnt getting better as wont take tablets " that from Gp and untrue . Just wont take all the tablets she suggests !!!

You cheer me up no end .

We all need love, luck ,and humour to get through. 🥰