Hi I’m new here, sorry if I’ve posted in the wrong place. I’m waiting on blood test results having been seen as an emergency at my GP practice yesterday. I will try and make this short. I’m getting tingling itchy kind of sensations in my fingers and occasionally on my left foot. I also feel shaky and my co ordination seems slightly odd. When I walk my legs feel weak but heavy and the left one feels ‘empty’ that’s the only way I can describe it. I’m tripping up steps too. I’m fine when sitting down and strangely enough when having tests with my Dr yesterday she said I’ve not not lost strength my legs and hands are still strong. I do have muscle wasting on my legs I’ve noticed that for a while. Dr examined my balance which was ok at that time and then looked at the back of my eyes as an optician would they were fine.
I have an odd tingly feeling on my lips and tongue. And I feel clumsy. I’ve been worried as I am the same age as my sister was when she was diagnosed with a brain tumour.
My Dr looked back at my last blood test two years ago and asked me if I’d followed it up which I had and been told all was normal. She then proceeded to tell me my vitamin b12 was quite low even then and said she thought it was highly likely my symptoms were because over two years it had become lower. I suppose what I’m trying to ask is if my symptoms are similar to anyone else here?
She also asked me if I was vegetarian or vegan I’ve been a vegarian over thirty years I don’t eat eggs or drink milk either. I also haven’t been eating very much since my husband died suddenly last year.
Please excuse any mistakes my typing is slow now. I also have a terrible memory problem.
Many thanks if you got this far
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Someone very knowledgeable will no doubt reply to you very soon, but I just wanted to say it does sound a lot like B12 deficiency symptoms, and to reassure you that you're not alone. If it's B12, then a loading dose and every other day injections will be really helpful, although it might take a while. Welcome and good luck x
given your diet there is a strong possibility that you have a dietary B12 deficiency - which can be corrected by take B12 supplements of 50mcg - generally think it is 2x daily for a month or two.
You store significant amounts of B12 in your liver and they are then drawn down to regulate your serum B12 levels but if you haven't had any B12 in your diet for a while then your stores will become depleted and run out so your serum B12 falls and your cells don't get the B12 they need to run a number of key processes. This can take years and even decades to happen.
which do overlap with the symptoms you describe above.
Pernicious anaemia is an absorption problem that results in b12 deficiency. If you have an absorption problem then the 50mcg tablets won't correct your deficiency and you will need injections for life.
Thank you for such a detailed and helpful reply Gambit62. The link is very interesting too I shall read more about that. Thank you for explaining these things to me and taking the time to reply 🙂
I'm very sorry to hear about your husband and your health problems, which sound very frightening, especially given your sister's illness.
I agree and it sounds like your doctor is on the right track. It sounds like it could be B12 deficiency, so therefore treatable. Although you may not make a full recovery, you should hopefully see some improvement over the coming year with regular injections of B12. It could be that you are deficient just because you haven't been eating it at all (no meat or eggs or milk). If I were you, I'd be very keen to have injections every other day until you are significantly better. It might be a good idea not to start taking any B12 tablets that you buy yourself until you've had a blood test done. Although it sounds as if your GP has hopefully already tested B12?
Please read up and learn all you can. Make sure the doctor keeps up the good work!
I am not a medical expert, and this is just my opinion.
Thank you blogsy2 I appreciate your reply and kind words about my husband it was a terrible shock he died from a brain haemorrhage while at work. I’m finding it very hard and my anxiety over it is not helping my symptoms at all.
My GP is testing for all sorts 🙂 including the b12 deficiency. And I wouldn’t take anything until I’ve seen her again all I know now that it was 111 (however they measure it) over two years ago and I wasn’t informed. .but I need to see what my results are and do more research if I need too.
Strangely my symptoms have eased a little tonight. I really don’t understand how or why that would happen. I thank you for your reply especially the mention of my sister. Most of her symptoms were different but you still worry don’t you the last thing I want to do is bring more worry on my poor son as it’s only us left apart from his partner and two children.
111 is extremely low, not "a bit" low. What treatment did you have at that time? I'm wondering if they gave you a B12 shot, then tested your levels (which were artificially high after the injection) and then said, "You're fine."
I think this is highly likely to be your problem, but I'm not qualified, just trying to be helpful.
Why don't you learn and be entertained at the same time by watching this movie?
I was told my blood results were normal at that time over two years ago. No one mentioned my vitamin b12. They were doing an overall check but they failed to tell me something wasn’t right. I only found out this Tuesday when seeing GP with these horrible symptoms that had been vague for a while until last Friday when I literally found it hard to walk. I felt like my legs were in slow motion and didn’t belong to me. So I am waiting on these blood tests now.
I will watch this video thank you so much. I ordered her book last night on kindle. I don’t mean to sound silly but I’m hoping it is this vitamin deficiency even though I’m aware now how many people are suffering such awful symptoms.
I never take anything for granted and watching my dear sister go through what she did breaks my heart still. I’m hoping for different ‘problems’ ‘outcomes’ so that my son doesn’t have to cope with anything else.
I'm quite shocked that your your B12 was 111 and they told you it was normal and did nothing. It sounds as if they might have been negligent. Many GPs seem to underestimate the seriousness of B12 deficiency. They don't have much training on it, and they are of course often overworked, so don't pay the attention to things that they should.
If your problem is B12 deficiency, which I think it most likely is, you definitely have neurological symptoms. This means you need the highest level of treatment, which is an injection every other day until your symptoms stop improving. This is written in the NICE Guidelines that your GP is meant to follow:-
If your GP does not offer you B12 injections every other day until your symptoms cease to improve, I would print this out and take it along to show them. Underline the short section on treatment for neurological symptoms. Or better yet, put it in a letter to them, which will go on your file. If I were them, I would be worried that you might have a possible claim against them, and I would make sure to treat you properly.
Your GP should also refer you to a consultant. However it's important that once your B12 has been tested, you don't have to wait for the B12 injections to start. Your deficiency may well be due to your diet, but injections are the fastest and most reliable way to raise your levels, which is what you need to do now in order to allow your nerves to heal. Your memory problems and difficulty typing are also probably caused by the B12 deficiency.
As for not eating much, as well as being the result of your grief, lack of appetite is a sign of B12 deficiency, so hopefully when you receive some B12, you will start to feel a little more like eating. It must have been the most awful shock for you when your husband passed away so suddenly. I'm so sorry. But I'm sure that he would want you to eat and be well.
I would also ask your GP to test your:-
folate
ferritin
vitamin D
if they haven't done this already. These may also be low. You will need plenty of folate when you start your B12 treatment, but don't take any folate supplement until 24 hours after your first B12 injection.
Thank you so very much blogsy2 for such an informative reply. I really do appreciate your time and effort.
It’s been such a long day today at work, I had trouble forming the right words to customers today.
Tried hard to walk my dear little dog tonight and then work again it’s hard I have no strength or energy or balance etc .
I will look into all that you have mentioned here thank you so much x
I had my results today. My GP says my bloods show a definite b12 deficiency. Every other test she did came back normal. My levels are now 122 which they said was far too low. I’m confused as it’s slightky higher than 111 over two years ago
I have to go and have the first of my injections tomorrow afternoon.
My symptoms seem worse in the daytime and ease at night. It’s such an odd thing.
I am really so grateful for your help I will stay on here . I am hoping that you are ok and well xxxxx thank you again xxx
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