Hope ........................

[JanineRockChick]

Hi just wanted to update everyone, diagnosed with PA 20 years ago and been on 8 weekly injections for past 6 years. Seems to have been a constant battle with various GP's as they all seem to want to constantly revert to 12 weekly despite me displaying neurological symptoms in between shots. My next injection is due Friday 1 May, so given the current situation, to say I have been feeling slightly anxious about contacting my surgery to make an appointment with the Practice Nurse is somewhat of an understatement! However I have just called them and been advised that they are still carrying them out and I will receive it on the date, with the only compromise being that all appointments are same day only - so just need to ring on the morning when it's due and they will book me in! Shock horror can't actually believe it was so easy. There was I all armed and ready for war with relevant info and data that I got from on here & it wasn't needed. That said this site is excellent and I just wanted to say thanks to everyone who has shared the various sources and tips. Keep safe and well

[Nackapan]

Good. As it should be!!

[waveylines]

Great to hear. Glad your doctors surgery are taking your injections seriously. 👍👏👏👏

[Cherylclaire Forum Support]

You have a good surgery.

The practice knows that you have needed every single one of your 130 B12 injections so far, and that the coronavirus doesn't alter your need. That this can be done safely, with the right PPE and systems in place to protect everyone .

If that was not possible, they could always give you the B12 and equipment (sharps etc) and with guidance, you could self-inject at home. With a recommended video even.

No need to send people home in tears.

No need to trial pills without support.

No need to rely on liver stores that may or may not be accessible.

No need to tell people to buy their own tablets.

No need to discriminate between B12 deficient patients.

No need to retest once this is over.

And certainly no need to talk of toxicity or addiction !

(Luckily, not all of them are like this. Just the ones we get to hear about.)

Still, good to be prepared.

[JanineRockChick in reply to Cherylclaire]

Couldn't agree more - I am fortunate that I actually work for the NHS (non-clinical) and I had already spoken with one if ur Occupational Health Nurses who advised that if the surgery refused that they would be able to prescribe & administer provided I had evidence (i,e repeat prescription) which was whilst good to have up my sleeve it really shouldn't rely on me having this advantage. It's disgraceful the way we are all overlooked at the best of times so no wonder that they have seized on the current situation to deny and withdraw vital medication.

[Cherylclaire Forum Support]

An education issue.

There seems, even at the highest levels, an incomprehension that B12 deficiency can cause anything beyond a tiredness that the loading injections will soon put right. It has now taken me 5 years to get anywhere close to who I once was- and a far greater amount of injections than I would have been given by the NHS. Still, if I try to reduce my intake further, symptoms return....as if all just waiting in the wings.

This underestimation of the effects of B12 deficiency would perhaps be understandable had the medical experts not seen (surely by now over and over again) breathless, gasping patients who look yellow-pale, going bald, with split sore mouths and large sore tongues, patients unable to understand what they are saying, unable to explain their condition, unable to find their notes, unable to walk properly, unable to stop crying/ shouting. Etc etc etc.

No wonder so many patients get misdiagnosed - medical professionals are probably looking for something far worse than a mere vitamin deficiency !

Pelagra, beriberi, rickets, yes, but vitamin B12 deficiency ??? We didn't do that one at school. Maybe "pernicious anaemia" sounds way more dramatic, but also quite Victorian, like consumption or the vapours; something that has probably died out by now. Plus there seems a huge reluctance to declare it as such.

Well, we've all looked up "pernicious" in the dictionary, haven't we ?

Anyone here who didn't think, at some point, that they might be dying ?

We don't have to. We just need the medicaI profession to recognise what they are looking at, and treat it properly, without fear of addiction or overdose. Then it can just be life-changing. Maybe not even.

I'm not from the NHS, I'm just a teacher (part-time now). It's why I care so much about education. We can't make progress without it.