Thanks to anyone who takes the time to read or reply to my post.
Before Christmas 2024 I started to feel unwell, initially thought I was getting a virus. Boxing day I ended up in a&e with a long list of symptoms.
Chest pain
Fatigue
Shortness of breath
Palpitations
Dizzy
Nausea
Headaches
Back pain by spine
Sciatic pain- worsening in hip
Burning tongue
Weakness in arms
Heavy/weak legs- sometimes with crawling sensations
Pins and needles in heels of feet
Numbness in hands
Off balance
All over muscle and joint pain
Loss of appetite
Weight loss
Awake for hours at night-insomnia
Delayed periods or missing periods
Sometimes cramping in calves
Upset stomach
Twitching in legs
Tightness in hands
They thought I had a lung clot and started treatment for this. 2 days stay in hospital chest xray and ct angio normal so sent home and told I had a virus. No exaggeration I felt like death!
About 4 days later went to my gp and she sent me back to hospital saying that I was too unwell to be at home. Told by an Ed Dr there was nothing wrong with me but I demanded repeat bloods. He noticed I've been low on vit d previously so sent b12 and folate and this came back SEVERLY low at 16- active level. Treated for this with injections.
I self referred back to neuro, as my gp didn't want to continue treating me, although my neuro symptoms were still present. I've had SFEMG and EMG, both negative. Had a whole range of different blood tests sent and the only thing that came back was positive sox 1 antibodies, the first part of this test was negative. No sure what the first part was...
My symptoms have much improved with continued b12 treatment. Had a head and spine mri, both fine apart from bulging discs, which I know can affect nerves cause neuropathy symptoms. This had all calmed down now also.
My neurologist is sending me for ct and pet scans to rule out any malignancy and to be honest I am terrified. I am still fatigued at times, but still recovering from b12 deficiency. My neuro symptoms have really calmed down but I am still having some arm weakness.
My neurologist has mentioned sfn or peripheral neuropathy if these scans are negative. She also said id be followed up with a blood test again in 6 months and if positive scans will be done again. I'm just so worried 😟.
Has anyone has simular experiences?
Thank you
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Hgsn
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I2 years ago I could tick everything on your list (except the delayed or missing periods as I had gone through the menopause by then) You must keep going back and keep telling anyone and everyone what is going on and as Nackapan says keep going with your B12. Good luck and hope some of your symptoms settle soon and that you start to feel at least a little better👍
I'm sorry to read that you are having a scary time but pleased that your neurologist is being thorough.
I wondered if you're getting enough B12.
How many loading injections did you get at the start of your B12 treatment?
How often will you be getting B12 injections once loading injections are finished?
Many UK forum members find that they need far more B12 than NHS will give them.
Some of the info I post may have details that could be upsetting to read so you may want to have someone supportive read through the info with you.
BNF (British National Formulary) is a book for doctors with treatment recommendations.
For those with B12 deficiency with neurological symptoms, it suggests
A B12 loading injection every other day for as long as symptoms continue to get better then a B12 injection every 2 months.
There is no set time limit in BNF as to how long a person with B12 deficiency with neuro symptoms can be on every other day loading injections.
If symptoms are still improving after two or three weeks of every other day loading injections then the every other day injections should continue.
It's vital to get enough B12 if you've got B12 deficiency. If treatment is delayed or inadequate there is an increased risk of developing nerve damage (neuropathy).
You mention a lot of symptoms that would usually be considered as neurological.
Does your neurologist have a list of all your symptoms?
Other blood tests
Have you also got results for folate, ferritin and other iron tests and Vitamin D?
Forum members often report deficiencies in these as well as B12.
My advice is to always check your own test results even if told they are normal by your doctor.
Thyroid
Many forum members here also report thyroid problems. Thyroid UK forum on HU is a good place to ask questions about thyroid test results.
Doctors and B12 deficiency
Many forum members here have met GPs and specialist doctors whose knowledge of B12 deficiency is limited.
If you can find the time and energy, might be worth reading more about it in case you meet a health professional with poor understanding.
Causes and Risk Factors
I'd expect your GP to try to find out why your Active B12 result was so low.
If the B12 deficiency is not due to diet, I'd expect doctors to at least test for PA (Pernicious Anaemia) and Coeliac disease.
PA and Coeliac disease are two autoimmune conditions that can lead to B12 deficiency.
If you suspect PA is a possibility then worth joining and talking to PAS (Pernicious Anaemia Society).
PAS membership is separate from membership of this forum.
These were published some years ago so some bits probably need updating.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
NICE guideline B12 deficiency (UK document)
In 2024, NICE published a new guideline on B12 deficiency in UK.
Might be worth looking at this when you have the energy.
There are bits I don't like about it....I feel there is too much emphasis on giving people high dose oral tablets as an alternative to B12 injections but there are some good bits.
PAS and B12info.com have articles about the NICE guideline.
I'm not medically trained, just someone who had years of untreated B12 deficiency.
Good luck with getting the help and support you need.
I've had similar systems and could definitely understand the feeling that you're going to die. I felt the same way, many nights I cried and prayed . I literally felt my body shutting down, thinking about it I still get chills. The hospital told me they couldn't find anything wrong I went about 5x and they thought it was all in my head. They couldn't explain the why's of my symptoms so it was easy for them to lay blame. I eventually switched GP doctor and she was caring , she was the only one that listened and kept ruling out things. I say all this to tell you, it's a long road ahead. If your intuition tells you something isn't right or not making sense hold on to it.
B12 injections saved me. I feel alot better now , I have found though if I'm in an environment where the air isn't circulating I get light headed so I carry a fan. I've also done MRI as I often had headaches there has been damage but nothing that the doctors are too concerned. They first thought it was vestibular migraines but that was ruled out.
You're not alone with your symptoms. I do on my own B12 injections after time you will know what frequency works for you. I supplement with other vitamins as I have another anemia. This forum has educated me so much and I hope it'll do the same for you. Do your Research , review your tests sometimes the answers are all there just needing an inquisitive mind.
Thank you for this. I'm going to start self injecting I between my monthly with the gp. I just feel like it's not enough. I'm worried about doing it but I'm worrying myself more by not doing it and putting symtpoms down to something else, which may not even be there.
I was very nervous at first bc I'm afraid of needles but I had help from a friend in the medical field who taught me how to do it . I watched her a few times and with courage I'm doing it. Now it's a breeze.
It can take years to fully recover from the damage done by b12 deficiency. I hope you had your thyroid, vit D and ifab tested as well. Also, follow the protocol with injections EOD. Ive been injecting for 2 years and I'm still making progress on symptoms I thought were just permanent damage. Try to stay positive. The best thing about PA or B12D is there's a treatment, it just takes a really long time to recover.
Thank you for this. My IF was negative. Tsh 'normal' but I'm having an ultrasound on this as the gp felt it looked enlarged (looks normal in appearance to me that I have always had) vit d was around 89 1 month ago so I'm working to try and get this up and taking supplements. I have now got my b12 from germany so am going to start injections tomorrow and then just attend gp for my monthly one. 🤞🏼 my scans are nothing nasty.
B 12 that low doesn't happen overnight. In terms of your symptoms, it is known that low b12 can cause neurological symptoms, but these are not neccessarily the same for everyone. In my case when it was low I would get a numb patch on my leg which would come right after the injections. My vision would also suffer a little bit and come better again with injections. Others, and it seems you as well, can have a whole lot of more trouble. You do not say if you have been tested for antibodies (intrinsic factor). This should be done to give a better indication of whether or not you actually have PA. If positive you will need monitoring onwards, and regular injections. My grandmother as I have been told suffered terribly with PA and was bedridden with it in her early life until medication became available. The condition is hereditary, but I never had a problem till later life.
Thank you for this. My IF result was negative, hence why my neurologist is now looking for malignancy to see if it dropped low for this reason 🥺. I know many people never get answers or investigations so I am grateful but also worried.
Interesting to also read a recent post from someone about sublingual products that can help without the need for injections. For me, and not to be confused with everybody!!, I get a little craving for marmite sandwiches (and I like it real thick). And this gives me a little kicker. I think it is the body recognizing I need the vitamin B that marmite contains, and I absorb a bit of it by that which hangs around in the mouth.......maybe! Good luck!
Reading your list brought back so many very sad days and nights that I went through. I had every symptom on your list except the burning tongue and delayed periods. And no one in the medical field knew what I was going through. I was even told by one doctor that it was in my head. This part is so frustrating, but please know don't ever let anyone tell you you don't need those injections when your numbers get within range . You take those shots no matter what and eventually you will see improvement after improvement. Yes, it's a rough journey but it's light at the end of the tunnel. I'm not saying I'm completely healed but it is absolutely nothing like it was in the beginning. I'm praying for you
Thank you for this. I think while I'm waiting for my scans and results I just need to concentrate on getting enough b12 in my system. I'm starting my self injecting today 😊
A couple of comments I think are relevant from a couple of the better medical journal articles on B12 deficiency:
Ralph Green, in his article "Vitamin B12 deficiency from the perspective of a practicing hematologist":
"It should be noted that patients with pernicious anemia at times report that the recommended treatment schedule is not adequate to relieve all their neurological symptoms and therefore often request, or may even treat themselves with, B12 injections more frequently than the guidelines suggest. No biological basis for this apparent increased requirement for B12 replacement is known, but because there are no reports of adverse effects associated with excess B12 intake, there is no reason to advise against this practice."
Bruce Wolffenbuttel, et Al, in "A Brief Overview of the Diagnosis and Treatment of Cobalamin (B12) Deficiency":
"Long-term B12 supplementation is effective and safe, but responses to treatment may vary considerably. Clinical and patient experience strongly suggests that up to 50% of individuals require individualized injection regimens with more frequent administration, ranging from daily or twice weekly to every 2-4 weeks, to remain symptom-free and maintain a normal quality of life. ‘Titration’ of injection frequency based on measuring biomarkers such as serum B12 or MMA should not be practiced. There is currently no evidence to support that oral/sublingual supplementation can safely and effectively replace injections."
Most of us, to a lesser or greater degree, have to take it upon ourselves to insure that we get the treatment - B12 injections, sometimes at a frequency of daily - we need to restore some semblance of a normal life.
Make sure, once you are getting enough B12, that you get enough co-factors too. Vitamin D,
all the Bs - I take Igennus Healthcare SuperB-Complex because it's all the methylated forms,
DHA omega 3 fatty acid fish/algae oil to rebuild your nerves,
zinc not necessarily every day,
magnesium- I like it in lotion or bath salt form.
Keep off alcohol.
It sounds like you've been through a tough time. It does take a while to get on the mend. And expect a few weird symptoms on the way to recovery. This group is a great support. 🍀
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I had b12 injections stopped during covid I’m now getting them again 
peripheral neuropathy 
Anybody recognise these symptoms 
I don't think I have PA but I would appreciate the benefit of your advice please?
