I second that!!!!! Outrageous and such unfair treatment.
I'd liked to press the like button, but sorry I cant. I do not understand there stance. Perhaps you could locate the information from the Netherlands? Where thier treatment is every other day for two years.I am sorry for you nackapan, the stress and constant arguments with the medical profession must be driving you up the wall.
At least you have the ability to self inject.
Sometimes it just too much to get doctors on your side and work at improving your health.
Wow that's refreshing to know. Every other day???? No wonder my nerve pain is not improving. Thanks a million for sharing as it puts some perspective for me and I shall adopt this regime straight away. Cheers
Thanks. I will be sending her another but waiting for outcome first. This letter was to try and get GPS to discuss my case . New partner and My gp who eventually decided to prescribe 2 weekly injections mostly done at home.
Not so good at links .
Will go through your links .1 Tkort Dutch info on not being able to overdose
2 British society haematology on not testing levels once on injections
Wow, what a day you've had! How very upsetting too. So unnecessary. I told my MS nurse that I self-inject and that I take cannabis fudge (home-made) when pain get's too much. She was surprised, almost judgemental (but I gave her "the look" that I inherited from my Dad) then intrigued and asked me loads of questions. Good luck with your situation. It's not your GP's place, nor your neurologists, to tell you what you can or cannot do. They can advise but it's YOUR life.
Sorry to hear.I am in a new surgery and they out my 10 weeks back to 12 weeks. They where even willing to stop my b12 because I said one jab every 12 weeks is not enough so I do my own at home. For God's sake do not take me off the 12 weeks as you will think I'm completely fine.
This whole telephone system of now seeing your GP is horrendous. The Dr just prescribes pills and says get on with life.
So, rather than get stressed I just upped my jabs and I'm grateful they are cheap enough to do so and that we can buy them online.
My gut says that we will be able to buy ampoules in this country soon and not due to out GPS understanding, quite the opposite. I feel a lot of us will be wiped off and asked to buy our own like normal vitamins to save surgery's spending necessary. I could be wrong but that's the feeling I get.
Please try not to stress because we have a solution and that's standing in our power and buying what we need.
You know, I don't bother with my GP regarding B12 anymore. I am happily self injecting at home to keep myself alive. All my GP does is 'allow' me to have a vial of Hydroxocobalamin on repeat prescription every 3 months. Four times a year is what they feel is sufficient. I don't even go in for the injections anymore, the vials are in the bag with my other medication from the pharmacy, so I self inject that, too. If it weren't so serious, it would be laughable.
Nackapan - much sympathy, and kudos for still fighting the good fight. Like Emsworthy we have given it up, and just SI at the frequency we feel we need - 4 weekly, sometimes 3 weekly.
But we have a vague feeling of guilt, because every sub rosa SI is a missed statistic for the NHS, one that could have told them that their two to three months’ guidelines just aren’t working - while on the surface it looks like they are.
Our GP knows we SI though, and it’s a relief for her, because she doesn’t have to fight the system on our behalf to get our frequency on the NHS - a battle which seems to win the doctor and the practice no brownie points, in fact quite the reverse.
Maybe we should all send in the schedule of shots we have actually had, every three or six months, and get them recorded in our notes? Then, at least, the evidence that two to three months isn’t enough would start piling up, on the record.
Good idea. Would it be noted nd coated though or just filed.
I'm going to pick a few trips NHS doctors brains as a way forward.
Unfortunately rather have it embedded 3 monthly fits all.
It's knowing how to navigate te system without putting up backs otherwise strong brick walls appear
Despite the ridiculous reassurance from s neurologist this gp wanted updated.(only 18m old letter and neurologists can't update as has died) He did listen .
Will see .
Also will try again to source the late neurologists medical notes on me.
Last attempt failed.
He was at the top if his game sbd respected.
Only have 2 letters written to gp
Last one advising 2 weekly b12 injections to continue .
Also asking to allow me to self inject sc at home .
My go refused initially but then rang out of the blue as stood up to her peers. I hadcto take responsibility for snt harm injecting .
That neurologist I paid yo see . After his quite sudden sad death I left it a decent period then asked gof my notes. The secretary trued but soon after his widos stopped all contact.
Not sure if same rules?
Last consult was by phone. 2020.
Have z copy of that letter.
Previously 2 face to face. 2019
Gosh Nackapan how awful for you to have to fight so hard to try and stay well! I admire you so much but I can see it is so stressful for you and upsetting. Try and have a relaxing weekend and do something nice, you so deserve it . Best wishes xx
It’s so unfair the way you were treated. It’s like having a B12 deficiency is a sort of stigma. All we want is our rightful injections to feel ok [ not even on top form] to get on with our daily lives. I fought for 6 years to get my injections back after a stupid young doctor said pernicious anaemia goes away.I really hope the stress hasn’t made you too I’ll and hope all will be resolved.
Even with all your problems you still find time to look after us all. Very best wishes x
I just wanted to send my support 🤗 My husband & I were saying last night that it's a shame all the 'mental torture', because that's what it feels like to me, can't be Seen by the faceless people causing it. I've been quiet on here as girding my loins & energies for mesh removal surgery on 20/1 - which has just now been cancelled for 4th time 😭 We need an honestly committed caring 'Tzar'🤔 to sort the nhs out. I do recall a well respected businessman making a programme 'inside' the nhs a few years ago, with lots of recommendations on how to improve things, it obviously fell on deaf ears! I live in different area to where my operation is booked, there is a booking system in place to arrange out of area pre-op CV Swabs (ICE), my area trust uses it, the trust where I'm having my op doesn't so can't access the swab results........
You are so right about continuity - you have been very ill, very obviously ill, and any GP who has seen you regularly (....back when that was a thing !) will have noticed a good few of your symptoms in the same way that your colleagues, friends and family do.
It would be almost impossible to know where to start now with a "newbie" over the phone (especially knowing that that in itself will cause you some symptoms). It cannot streamline the process of reinstating your treatment at an effective frequency and any delays will as you already know be detrimental to progress.
What is very evident to all of us who have followed your story with interest is that you have worked really hard over a long period to regain your health, with little real medical support beyond an acknowledgement that your case is complex. Far too complex for a telephone call.
You have certainly made improvements. Because of the length of time this has taken, it may not always be clear to you but it is to us. Your innate stubbornness is your best friend, but there are plenty more friends here that you can count on if you need support.
Stress can suck up all that fresh B12 - although good that you managed to get your points across in a face-to-face with new practice partner.
While there is often a completely unwarranted "fear of overdose" within the medical profession regarding B12, I believe that in your case there may also be "fear of deterioration".....
Well, good. So now they know how we all feel !
Why else would anyone order B12 online and teach themselves how to self-inject it ?
(Please don't let anyone mistake this for "addiction" )
Family trait that has probably has helped you over the years to secure better healthcare for both. Now time to do it for yourself !(I remember for years thinking of myself as "easygoing" - causing sisters to howl with laughter!)
GPr practices are private businesses.They then take on NHS patients. The NHS pays them to give certain treatments. Some treatments get cancelled by GPs , eg ear syringing, so one now has to go privately for simple ear syringing, Specsavers charge £35 let ear or £70 for both.
NHS dental treatment is similar. But, NHS only now does the very basic quality of things like caps, dentures, fillings etc. My dentist keeps me informed!
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Here we go again. Help for my Daughter.
I don't want to go down the rabbit hole again...
