(Bit of background to anyone who hasn't read any of my posts before: I had a loading dose of B12 injections in December after experiencing extreme tiredness, low mood etc. Had a blood test taken two weeks later and my B12 levels were at a 93 and folate was half the normal range. Doctor recommended another loading dose of 3 injections per week for two weeks and then I'd get 1 injection a week for four weeks.)
I'm on week three of 1 injection per week and it doesn't feel like it's enough. I get my injection on the Friday and I have enough life to last me the weekend, but by Monday/Tuesday, I'm just a tired mess again. I have been experiencing some neurological symptoms (don't actually know how long this has been going on as I was only recently made aware of the connection between these symptoms and B12 deficiency so didn't really note it down before) but brain fog is the worst symptom I've had. Whether it be the name of a person, street, television program... I just go blank. I can walk into a room and forget why I went there in the first place. I can ask someone a question and re-ask them again two minutes later. Less frequent symptoms are numbness in my left pinky finger, left pinky toe, tingling in my scalp, tingling/pins & needles in my back and tingling in my tongue.
The thing I've been noticing over the past few weeks is black spots in my vision. Whenever I blink, I can see them and I'm not sure if it's related to this, but it's definitely a new symptom. Headaches, too. I always have suffered from quite painful headaches, but I think these could be migraines? Does anyone know if this is another symptom of B12 deficiency?
This Friday coming (March 11th) will be my last injection for 3 months and I'm not sure what to do about that. I've been trying to get an appointment with my GP to discuss all of this but there's never any appointments. I can phone first thing in the morning and they'll say they're fully booked. I went in last week to pick up a prescription (place was empty) and I asked to make an appointment with my GP, or any GP at this rate, and the receptionist said "we're fully booked this month.. try calling in the morning's to see if we have any cancellations."
I honestly don't know what to do at this point.
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KCxo
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Take heart and keep pushing to get what you need to feel better!
I'm not in the UK but the guidelines say shots every other day til no further improvement. Have they tested you again at least? It was still so low after the loading doses, they weren't concerned?
If it is any comfort, I had some pretty strong neurological and cognitive symptoms for a year before I got treatment. Very much like you describe. I even had black swirls in my vision, like squirrels darting out of the corner of my eye.
I started weekly shots last May. I had to convince my doctor to keep them weekly. I still don't feel it was enough for me, but a great deal of the feeling has returned and my mental state is more normal. The improvement has really been since about Christmas.
So please stand up for your health, it's important. And also try to eat as nutritious a diet as you can. I've struggled to keep potassium, magnesium, and iron up.
I too have noticed black spots if my B12 levels are low but they do go when I get enough.
Sounds like you MUST get more B12. The BCSH guidelines state you should have every other day injections until your symptoms are resolved and I'm sure this is critical.
With this you will need extra folate and other supporting supplements, especially potassium and magnesium.
Try what you can but also consider self injections. If you would like some ideas on this, look up my profile and see my post "My Experiences".
I think so. Sometimes I'll just be looking and next thing there's a black spot on the wall and I'll blink and it'll move around and eventually it goes away.
Disgraceful situation at the surgery KCxo. Does it have online facilities for making appointments?
I'm very fortunate that I can book up to four weeks in advance (which I do for my injections with the nurse who gives me my injections) choose to see any doctor available and also request repeat prescriptions which are automatically transferred to my preferred pharmacy for collection.
Is Doctor Finlay still working at your practice?
Keep battering at the door and as Allyson1 says "keep pushing to get what you need to feel better!"
I'm surprised that the GP has not continued loading injections every 2 days for an extended period if you have neurological symptoms. My understanding is that this is what the BNF recommends.
I don't have any practical advice to offer other than what others have said. But I wanted to say that I had all of the symptoms you listed when I was b12 and folate deficient, including the black spots in my vision, the migraines (3-4 a week) and the tingly scalp. I hope you get some better treatment. Good luck.
When you do eventually get an appointment, go armed with a list of symptoms - before and after injection and which ones are eased and which are still troubling you. Take someone with you if you can - they can use their faster brain when yours is having a delay. You have to be your own advocate - don't take no for an answer! Good luck.
Also, a gluten free diet seems to be universal with sufferers, so maybe try it.
Migraine like headaches are most definitely associated with B12 deficiency. Migraines can also come with a range of visual disturbances - for me it's shooting stars and patches of colour - for many these can be warning signals - ie preceding the headache of the migraine.
I think you need to get a little bit more assertive with the receptionist. A B12 deficiency is a life threatening condition and being continually fobbed off the way you are is not acceptable - failing to treat it properly can result in complications that are a lot more complex and a lot more expensive to treat than B12 shots.
I'd try explaining with specific dates that you have been trying to get an appointment for a while as you are suffering serious complications. At the very least you need to be put on the call back list for the duty doctor who, in all probability will ring and talk to you - at which point you need to stick to your guns until they actually agree to book you in for an appointment. Try to get them to give you a double appointment and try to take someone with you to help with communications etc.
I have seen the whole "shooting stars" thing before. It was so strange. Broad daylight and it looks like hundreds of shooting stars across the sky and I'm asking people "are you seeing this?" only to now realize it's been a symptom. Oops.
I had migraines for years but didn't make the connection to the visual disturbances until a conversation probably about 8 years ago with a friend who suffers from 'silent' migraines - no headache: just the visual disturbances. She's an artist doing a lot of fine work so it is really awful for her.
Had an incident on Saturday which was different from my usual visual disturbances - patch of vision just disappeared into a blur and as it was in the centre I was totally unable to read - that's the sort of thing my friend gets - fortunately it didn't last too long and I wasn't doing something that I couldn't stop and go back to later.
Quick update: I finally got an appointment with a GP. Not the one I have been seeing regularly, but someone is better than no one. I am going to write a list of my symptoms, how frequent they are etc. so that they can't fob me off with those ineffective cyanocobalamin tablets.
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