with B12 deficiency and Periferal Neuropathy by GP. Received loading doses and put on 12 week injections and told I would need them for life. No contact from GP after that until friday past.Told injections have stopped and will test me for PA in 6 to 12 months time. Take some B12 tablets in the meantime.
I know lots of sufferers have had injections stopped too. My GB said this was our health board instructions. But if the test comes back negative will that mean they stop injections permanently. Still 2 weeks away from when I would have been topped up and jaw, tongue, and fingers tingling along with other symptoms.
Really worried about this. I am in the higher risk group and not had contact with anyone except poor hubby since 15 March. Not that I want to go out, but don't want to get ill without the injection either. 6 to 12 months seems a long way away.
Many thanks for listening
Written by
MKitty
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I have a feeling that this new guideline will be ignored, they won't want to phone around again and go back on what they said. So I will see if I can email the reference to the GP.
If they stop your injections due to a negative result in the Intrinsic Factor Antibody test, I suggest writing a letter to GP pointing out that IFA test is not reliable.
I am in Angus, and my GP phoned me to say my B12 injections were being stopped, I have MS , the B12 really helps me, I am so angry with my GP but I really haven’t the energy, I will need it to try and find somewhere to buy my B12. The GP used the excuse of costs, no money in the NHS, and needing the resources for the COVID fight.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
"I am so angry with my GP but I really haven’t the energy"
Have you considered putting your concerns in a letter to GP?
Have a look at the links I put in my reply to Mkitty.
Has your MS diagnosis been confirmed by a specialist?
B12 deficiency can lead to symptoms such as SACD, sub acute combined degeneration of the spinal cord plus other neuro symptoms which can result in B12 deficiency being misdiagnosed as MS.
I am so sorry we find ourselves in this position. I will write to my GP when my symptoms get worse. But the worry is when we eventually get the country going again we will be fighting to get the injections reinstated.
I am not in Fife but in West Lothian and the story is unfortunately the same here. I didn’t get a call from GP, or a letter, just a text message saying injection was cancelled,there was no explanation or any offer of tablets. I have been having injections for sixteen years and find it all quite upsetting for everyone.
Hope you have some success when you contact GP. I have to decide what steps to take next
Hello, I am in Aberdeenshire, and have the same problem. Just had a letter saying they were stopped for a year. I have had injections for 40 years for Pernicious Anaemia. We need our injections. After reading a lot from other people on here I have decided to self inject. Mine is due and I am feeling weary and low and just not right. Have been practising on an orange and have watched a video and a member here kindly sent me lots of information on how to do it. With the Covid 19 which is dragging us all down we do not want anything else to worry about. Remember we are all here for each other. Take care. briar hill cat
Hello Briarhillcat, I am truly shocked to hear you have been told it will be a year before they start ( if ever!) I am beginning to think that they are going to see how we all get on over these next few months and this will determine future treatment. As you say, it is stressful and worrying enough coping with the lockdown, but this is adding a lot more unnecessary stress. I am sure we need the B12 to help boost our immune systems so there is another worry. Can I ask if you have asked your GP about self injecting ? I have needles but what I haven’t got is the courage to go ahead. It is such a difficult position they have put us in, very disappointing!! Good luck, please let me know how you get on
Hello. I went for a blood test and asked the nurse if should could give me my B12 she said she could not as she only took blood. Bit strange for a nurse. She fetched a doctor and they were following the Government rules and it might not be a year. |I said I was going to self inject, and he said he would not recommend it, but it was up to me. So I am going to do it. So many people on here are in the same situation. I am wondering if they will ever reinstate them. I have got all the needles and ampoules etc so am going to do it. I am a bit nervous but the watched videos and a kind person on here sent me the information. (sorry I cannot remember your name) So think we are all going down the same road. Stay safe. briarhillcat
Hi, I really wish you well with injecting, hopefully I will manage to overcome my fear. I think it is inevitable we will have to do it as it’s unfair to expect us to struggle through days feeling like this, we surely deserve to have some quality of life. Take care
I have just had to do some shopping and I had a hard job to get back home up the hill. I am sweating and trembly. I am trying to hang on until Monday as it is a bit nearer to three months. But I had them 10 weekly whilst caring for my husband then when I lost him, the doctor said the Government said three months. It makes your head spin. I have injected an orange again and did OK. Poor orange is full of holes!
I am sure I can do it, as you say, we need a quality of life. Good luck to you too.
I’m sorry to hear you are feeling so poorly...it’s just not good enough
You shouldn’t be left to feel like that. Even changing from 10 weeks to 12 is bad enough. I sent you a message the other day but unfortunately I’m not too good at using these sites and maybe you didn’t get it. I will try again. Hope you are feeling a wee bit better now after your shopping trip. Look after yourself
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