I’ve got some strange scary symptoms going on. It started about three weeks ago with a slight tingle on the top of my left foot which would come and go. By last Wednesday the tingling had spread to the left hand and slightly on the left cheek of my face. By Sunday the tingling is in all limbs extending up to the thighs. the thighs and feet also have a strange burning sensation now and again. Both hands tingling and also my face around the nose and lips with a strange pressure abound right eyebrow.
I’ve also developed a strange sensation in my throat.
I can’t eat with the nausea even though my stomach is growling with hunger.
It’s making me feel very anxious and I am scared to go to sleep. I didn’t sleep at all last night. I lie there with my eyes closed but sleep never comes.
Do these symptoms sound familiar with some of you before you were diagnosed?
I feel like I’m going to die and am terrified of leaving my two small children who are only 6 and 4.
Saw doctor yesterday and he didn’t seem very concerned even with these neuro symptoms! However he did order blood tests including B12 and folate. I had them today but the think results won’t be back until Friday.
Thank you for reading.
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Did doc order MMA do you know? If b12 is low and MMA is high that is very likely b12 deficiency. I had a lot of those symptoms! I was also extremely fatigued and had brain fog and muscle pain in my legs. Also very constipated. It’s not the end of the world but it’s a horrible feeling. I’ve had injections for about 5 weeks and I feel MUCH better. Good luck to you. This forum is so helpful too! ❤️
Thank you for replying. I don’t consume much dairy as it gives me bad IBS symptoms from the age of 16. I’m 32 now. I eat red meat quite rarely but chicken most days. so it could be dietary with me.
I actually went straight to Holland and Barrett after my blood tests and bought the sublingual B12 spray. And my mother has just brought me down some vitamin drinks containing high levels of B12. I’m really hoping they help.
I’m in the UK it takes ages to be referred to a specialist here. The GP wasn’t even concerned about the symptoms although I am lucky that he checked for B12 on the blood form. I should get the results by the weekend
I really thought I was reading my post!!! Like seriously my exact words and feelings and the progression of symptoms!!!! And my fears of leaving my kids! I actually went back to check to see if I wrote it. 😂 It was B12 for me and I’m three shots in. I’m still scared because of how I feel but everyone here will make you feel normal. I can see slight improvements already.
It’s dreadful isn’t it. I still can’t sleep tonight. My muscles are twitchy and lots of tingling. If my bloods come back and it’s not B12 I don’t know what I’m going to do. I’m so scared it’s some sort of awful neuro disorder. Anxiety is through the roof with this.Glad to hear you are seeing some improvements.
I’m sure it’s B12 but I remember your exact feelings! I laid in bed and worried that I’d die in my sleep and leave my three kids without a mom! I’m just letting you know you aren’t alone and I was there literally last week! I’m still anxious and frustrated with symptoms that go away and then come back a day later before the next shot. Everyone says it takes time. It sure does apparently! But I just wanted to ease your mind that these were my exact symptoms . Hopefully you find out soon! Call tomorrow! My B12 was read the next morning .
When you get the diagnosis be prepared to demand the treatment you need as laid out by the nhs - injections every other day until symptoms stop improving - that is not likely to be immediate and then bi-monthly. If there is deterioration then insist on returning to injections until no further improvement.
Dont accept to be told other - you have neurological symptoms and need to be treated as such. I was told my symptoms 'weren't neurological enough'.
My symptoms seemed to come in waves so it took a while to get on top of it.
Ultimately I decided to take control and medicate myself like so many here. Thanks to the kind people here I found the courage and advice needed to self inject and it is transformative.
The symptoms are too big to allow some doctor to prevent you to heal because of their ignorance. That sounds harsh, but the vast majority of doctors have no idea about this deficiency. If they are intransient then don't hesitate to ask for a different gp.
If the symptoms are there, you arent being treated correctly. Don't let them test you again either, false readings are common.
This is great advice thank you. It’s awful how you have to fight for this simple treatment, I can’t believe it! I’m lucky my GP even thought to test for B12 on the bloods form.
I started with these symptoms just over a year ago when my little boy was six. I was terrified and went on Mumsnet where someone told me I had MS... I then spent a lot of time panicking about neurological illnesses like that and motor neurone etc.
I finally saw a neurologist who ordered an MRI scan which came back clear. She wouldn't entertain the idea of B12 deficiency despite my having a history of it. She didn't even test my levels. I'm currently waiting to see a gastro consultant having been on the NHS merry go round for years (get referred, get nowhere, get discharged back to GP etc)...
I also have autoimmune thyroiditis. I self treat for that due to ignorant GPs. I also get my own blood tests done online once or twice a year, and post the results on Health Unlocked for advice.
I started self injecting with B12 a few months ago thanks to the amazing help on this forum and my symptoms are gradually improving.
I too get muscle twitches. Try magnesium for that.
And good luck. I know how scary it is when you have little ones and you're frightened of the future but you've come to the right place x
Thank you so much for your reply. How awful to have such negligent treatment from your GP. It really worries me. I am so glad you are starting to feel better.
I am so glad for this web page it’s really helped the past few days.
Yes and no! I was very "run down" as GP's called it & getting shingles or something every 2-3 years, then when I was between GP's A horrible GP was about to throw me out of her surgery when I remembered that I had a large rash on my belly/hip area. She then asked me what drugs I took & how much I drink, I told her none of either!
She then told me off about how ill & pale I looked, & insisted that I get a blood test for anaemia.
But I never got the result, but new then GP told me to take vitamins which I bought from Boots. But I continued to go down hill, then I heard on here that individual vitamins are important, I was getting really bad RLS, so then I started getting printouts sent to me as I was too ill with rickets seized back to answer the phone. GP made it clear that they don't "do" nutrition, so I am my own nutritionist/endocrinologist/neurologist/boneologist!
Soon after that I joined HU & someone on here mentioned that I was very low in range for someone taking high dose vits, & so I started taking sublingual B12 & levels quickly went to top of range, also RLS resolved.
Last few B12 reports were 50%? in range - I think. Magnesium helps too. I can no longer obtain printouts, but the fact that B12 & folate are the only vitamins/minerals other than calcium on printouts suggests that I was very under range, just kept in dark.
My late Mum had lack of intrinsic factor & pernicious anaemia which gave her dementia.
I'm having to 2nd guess where calcium, thyroid, vitaminD3, B12, ferritin which is always very low are & go by research & observation.
Best of luck to you, hope your NHS support you! xx
Wow you’ve been on quite a journey. It’s shocking how little support you’ve been given and it is worrying me. It seems even harder to get anything now and feels like if you haven’t got Covid then the NHS aren’t interested. And I actually work for the NHS and seeing some of the posts on here has been an eye opener for me.
There are many potential causes of B12 deficiency besides PA (Pernicious Anaemia).
Other causes may include diet, H Pylori infection, Coeliac disease, fish tapeworm infection, exposure to nitrous oxide, some drugs and medicines eg metformin (a diabetes drug), damage to terminal ileum (part of gut where B12 is absorbed)plus other possibilities.
Dietary B12 deficiency is sometimes treated with low dose B12 tablets.
Dietary B12 deficiency with neuro symptoms should be treated with B12 injections.
It's possible to have severe B12 deficiency symptoms with a serum b12 result that is well within range ( but very hard sometimes to get GP to consider B12 deficiency with in range results). I speak from personal experience with over 15 years of health issues, most of which disappeared or improved when I finally started B12 treatment.
Sadly B12 deficiency is not always as well understood by doctors as it could be so if you have enough energy, I suggest doing a bit of reading about it.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info in book is out of date, see BNF link up page for up to date info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Copies of these books may be available from your local library service. Some UK library services have click and collect during pandemic.
I wrote very detailed replies on another forum thread with more info eg more on symptoms, and causes of B12 deficiency, tests for PA, list of B12 websites, more UK B12 documents, letters to GP about B12 deficiency and other B12 info including hints on dealing with unhelpful GPs, which you might find helpful.
If you have neuro symptoms, have you been referred to a neurologist and haematologist if B12 deficiency suspected?
IF you have gut issues, have you been referred to a gastro enterologist?
Other conditions
Have you had thyroid tests?
Many on here have both B12 and thyroid issues.
In UK , Gps often only test TSH which won't give a full picture of thyroid function.
There are other thyroid tests they can order.
Suggest you put any thyroid test results on Thyroid UK forum on HU.
Symptoms Diary
Some on forum keep a daily diary of symptoms and when any treatment is received. Can be evidence of improvement or deterioration in symptoms which can be shown to doctors.
Regarding the thyroid tests they were also ordered. The only thing that has been done so far as far as I am aware is the blood test. The Gp didn’t seem very bothered. When I told him I had a gland up on my ear he didn’t even look inside it. I was told on the phone by another GP that reflex tests would be done at the appointment by they were not. Temp, Bp, hr not taken. He did check pedal pulse in my left foot but that was it. I had a feeling he was putting it down to anxiety
Hi, I can really relate I’ve had a lot of these symptoms plus more! I was only diagnosed Jan this year, and have already learnt there are so many different symptoms and everyone suffers in different ways! My symptoms have started changing and I now too get burning in my thighs. And sometimes feel like my face is going numb! Feel free to have a read of the first post I put up, I was really suffering at that time! If you ever want to pop me a message too please feel free
Sorry to hear you’ve been suffering too. Have you been having the injections? How much did they help? It’s the fatigue that’s really getting to me now. I’ve spent the past two days in bed. Plus I’ve no appetite and food tastes strange. So lack of food is probably making me feel weak also.
I’ve had my first load back in Feb, but they were stopped due to covid and I was put on tablets which haven’t helped at all! I am hoping after my next lot I start to see a difference, when I first have my loading doses they made me feel worse for a week or two, then I actually felt much better for a while! Hope you’re feeling better soon
Well everyone keeps telling me that I could still have a deficiency even with a serum B12 in the normal range. So I’m taking sublingual B12. My symptoms have lessened a bit but I am still not right. I’ve been referred to neurology so I will ask them if I can have further tests regarding B12. I want them to run every B12 test they can.
have your symptoms improved? I had a b12 deficiency 4 years ago and felt exactly like you did, with 5000mcg sublingual tablets i got better (it took about 6 months) but now i suspect it's back but not as bad. At the moment I'm feeling anxious (at times), fatigued, hard to concentrate, my ear pressure has rerurned, and my legs ache (no pins and needles though) but more of a I've just been running on a treadmill all day ache. I've re-ordered the sublinguals i used to take and hope that in a few months I'll be right as rain again. I haven't had my bloods done but I'm expecting my gp to ring me this week and will mention it to him.
Hi! Seven weeks on and I am still unwell. However I am getting better slowly. I’ve been taking sublingual b12 even though my levels were 512. I still have tingling in left leg, mild tinnitus and fatigue.
My doctors simply diagnosed me with anxiety and showed me the door. I had five weeks of diarrhoea and two weeks of nausea so bad I could barely eat. Thankful both have resolved themselves.
Sounds familiar. That's what i got diagnosed with too as i was previously diagnosed with generalized anxiety disorder a few years before. It wasn't until months later i requested a b12 blood test which confirmed the deficiency. To my recollection it took me 4-6 months for my pins and needles to fully go so don't give up. I can't quite remember about the fatigue but i have put up posts in the past (check my profile) but aslong as you persevere you will recover. It just takes time
my levels were in the normal range so I’m not even sure if it’s a B12 deficiency but I am taking the supplements just in case. I mean it won’t do any harm with it and I am improving but it’s such slow progress. I’m in the UK though and they only do serum B12 blood test here so who knows.
I had started supplements maybe about five days prior to bloods being drawn. Maybe this gave a false reading. But i’m too scared to stop taking the b12 for months to have another test in case it makes me feel worse.
I would carry on taking them for 2 more months. As it takes your body 3-4 months to replace all the red blood cells and you'll need the ones carrying the b12.
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I’ve had a lot of these symptoms plus more! I was only diagnosed Jan this year, and have already learnt there are so many different symptoms and everyone suffers in different ways! My symptoms have started changing and I now too get burning in my thighs. And sometimes feel like my face is going numb! Feel free to have a read of the first post I put up, I was really suffering at that time! If you ever want to pop me a message too please feel free 
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