I am dealing with some of the side effects of a b12 deficiency. I am still awaiting the results from a blood test, testing for intrinsic factor. Most of my symptoms have improved a lot but I am left with a burning pain all down my leg, off balance and most importantly speech difficulty.
Some of my words are all mumbled into one and I feel like the words I am speaking are slightly slurred. I have read multiple articles and looked on different websites but cant really find anything that expands on it. Has anyone else experienced this and if so, I would love to hear how its going for you.
Thanks for recent support within the community, wishing good health for all
You don’t say if you are receiving treatment i.e. B12 injections .But you say that you have improved . Yes , what you describe can be symptoms of B12 deficiency .
I would want B12 injections every other day until there was no improvement . for such neurological symptoms that you have.
It’s a fact that the Intrinsic Factor Antibody test gives a negative result for about 50% of P.A patients , so cannot be relied upon .
thanks for the info, I finished my loading doses 1 month ago and this symptom appeared a week into treatment, but it comes and goes. I will bear that in mind when I get results back
I think this was caused by extreme fatigue in some of the muscles around my mouth. I still have some mild weakness on one side and wonder if it's possible I had a TIA (Transient ischaemic attack) also known as a mini stroke.
Were you checked for signs of a stroke?
B12 deficiency can lead to high levels of homocysteine in the blood and high homocysteine has been associated with increased risk of stroke.
Any signs of stroke is an emergency situation. In UK ring 999 .
wow thank you for all this information. I am in the UK. I have a few tests waiting to come back and have described my symptoms to my doctor. they didnt really say anything but have noted it. I think it is something similar to your symptoms, my muscles from my cheekbones down feel stiff. Still recovering from a newly diagnosed deficiency. My twitching has mostly stopped, I'm just left with stiffness in my face. I really appreciate all of the information you provided and I'm going to look through all of it now. Thank you so much!
One thing I usually urge UK forum members to do is to track down the local B12 deficiency guidelines for their ICB (Integrated Care Board) in England or Health Board in rest of UK.
To find local guidelines, try a search of forum posts, an online search or submit a FOI (Freedom of Information) request to your ICB or Health Board website asking what B12 deficiency guidelines they use locally.
I also suggest comparing the local guidelines with UK national guidance on B12 deficiency. See links below.
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms present.
Keep letters short and always keep a copy.
It's vital to get adequate treatment. Inadequate treatment increases the risk of developing permanent neurological damage including damage to spinal cord.
Local MP may be worth talking to if struggling to get adequate treatment
More about neuro symptoms
My twitching
burning pain all down my leg
off balance
speech difficulty
words are all mumbled into one
words I am speaking are slightly slurred
I'm not a health professional but the above symptoms seem suggestive of neurological problems to me.
Have a look at the symptoms lists below and make sure your GP has a list of all your symptoms, especially every neurological symptom and definitely any affecting your spinal area.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (lots of pages).
Links to forum threads where I left very detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
I did develop a pain in lower back but it has passed. I had 6 loading injections and am scheduled to have them every 3 months now. I will mention all of this when I see a doctor next. Thank you so much for these resources.
"I had 6 loading injections and am scheduled to have them every 3 months now."
That's a treatment pattern recommended for those without neuro symptoms.
Take a copy of BNF hydroxocobalamin info with you to next appointment or ask GP to look at Chapter 9 Section 1 sub section 2 in their BNF book at the pattern for those with neurological involvement.
Both patterns of treatment in BNF allow for maintenance injections every 2 months.
Your GP may not be aware of this as BNF treatment changed a few years ago.
You could also show them page below from NICE CKS (CLinical Knowledge Summary) on treatment for B12 deficiency
If you were tested in past and had a negative result, check the guidelines to see if GP followed the recommended diagnostic process....some don't.
A person with coeliac disease may get a negative result in coeliac test if
1) they have IgA deficiency
2) they were not eating enough gluten before blood tested
Have you got recent results for folate, ferritin (and any other iron tests) and Vitamin D?
Forum members often report deficiencies in these as well as B12.
Thyroid
It's quite common for forum members to also have thyroid issues.
I suggest you put any thyroid results on Thyroid UK forum on Health Unlocked along with an outline of your story.
In UK, GPs often only test TSH and it's possible to have thyroid issues with a normal range TSH. There are other thyroid tests your GP or a specialist can order.
Sometimes being an assertive patient can put a strain on relationship with GP.
I always tried to be polite but in the end gave up worrying that I might upset my GP by challenging them when I realised I was headed for permanent dementia and spinal cord damage if I didn't get treatment.
Some forum members resort to treating themselves if NHS treatment is not enough for them, I see this as a last resort.
I think putting queries about treatment/diagnosis/referrals into letters to GP is likely to be more effective.
I got tested for coeliac disease, still waiting on the results, I will print out the related articles and persevere with trying to get this sorted. Thank you so much, you have been very helpful
I've also read that a pepsinogen test may be helpful.
A negative result in Intrinsic Factor Antibody (IFA) test does not rule out PA.
It's possible to have Antibody Negative PA but your GP may not be aware of this.
See diagnostic flowchart in one of my other replies.
PAS website has lots of useful leaflets/articles and a page for health professionals that I suggest you point out to your GP as they may find it helpful.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Muscle cramps
what a difference a year makes......
Unsure I’m getting the right treatment for B12 deficiency 
Muscle Damage from injections?
