I just wondered if anyone can confirm the neurological symptoms of B12 deficiency for me please. I'm currently fighting with the GP as I think I need more injections (I finished the 6 loading doses on Saturday the 17th) but he's said he's not sure what I'm describing are neurological.
Symptoms I have which I think are classed as neurological:
*Vision disturbances/new types of migraine with vision problems that I've never had before
*brain fog/forgetful/memory problems
*Weakness
*trouble walking/heavy legs/restless legs
Other symptoms:
*shortness of breath
*palpitations
*exhaustion
*pins & needles/tingling/lack of feeling in arms (not totally numb but the touch doesn't feel the same)
*anxiety
*change in taste
*burning in arms & legs
*tinnitus
And all over chronic body pain
Thank you for any help
Written by
Kma123
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Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Have you got any of these?
insect crawling sensation (formication)
electric shock sensation
Unusual skin sensations are called paraesthesia.
limb jerks (periodic limb movements) - can affect head, fingers, toes etc as well as arms and legs
tremors
clumsiness
dropping things
bumping into things
dizziness
poor balance
twitching muscles
rippling muscles (fasciculations)
flickering eyelids
difficulty getting the right word out (nominal aphasia)
going blank in the middle of a sentence
strange behaviour eg car keys in the fridge, boiling kettle without any water in it
incontinence
proprioception problems
Proprioception is awareness of where the body is in space.
Poor balance when eyes closed, it's dark or view of surroundings blocked is suggestive of possible proprioception problems.
For example I used to fall off the pavement when a person walked directly towards me and blocked my view ahead.
A person with proprioception problems may be able to walk heel to toe in a straight line with no difficulty but then be unable to walk heel to toe with eyes closed.
Search online for "Proprioception B12 deficiency" for more info.
Your GP should know (but some don't) that delayed or inadequate treatment increases the risk of developing permanent neuro damage. In severe cases the spinal cord may be affected.
Might be worth showing GP this PAS leaflet.
PAS article about SACD, sub acute combined degeneration of the spinal cord
If for some reason you show your GP the PAS leaflet about SACD as an example of the potential consequences of inadequate treatment, they may say that a person with normal range serum B12 will not develop SACD.
If they say this you could show them an article about a patient developing SACD with normal range serum B12.
Search online for "Turner Functional vitamin B12 deficiency" to find it.
See also Point 5 in letter writing link below for more examples.
If you're not happy with your next appointment, I suggest following up with a letter to GP and maybe copied to practice manager as well. Always keep copies of communication as they may be useful evidence in case there is a need for a formal complaint.
May be worth writing to GP in advance of next appointment as it will give them time to do their own research.
NICE include a list of symptoms in this document "NICE CKS Anaemia - B12 and Folate deficiency" which I suggest reading thoroughly if you haven't already, including the section on Background Information.
The Management section in NICE CKS document above discusses when a patient should be referred to a neurologist/haematologist/gastro-enterologist.
Have you been referred to a neurologist?
I used to put referral requests into a short letter to GP along with brief evidence backing my request eg symptoms list/quotes from UK health documents.
Be warned that seeing a specialist is no guarantee of a better understanding of B12 deficiency. I saw several neurologists and some other specialists and only one thought it was a possibility and even then I didn't get a diagnosis despite me having over 50 typical symptoms including many neurological symptoms.
NICE are due to publish new B12 deficiency guideline in March 2024.
Search for "NICE draft B12 deficiency guideline" to see what they have done so far.
If you haven't done it already, I suggest finding the local B12 deficiency guidelines your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland is using. If you can't find them online or by searching forum threads here then best bet is to submit a FOI (Freedom of Information) request asking which B12 deficiency guidelines they are using and for a link to or copy of them.
"BSH Cobalamin and Folate guidelines" is also worth reading.
NICE have a document "Suspected neurological conditions: recognition and referral" which has lists of neurological symptoms and might be a good one to quote from.
I fought for years to get treatment and had some bad experiences along the way. In the end I was forced to treat myself because I realised that I was headed for permanent dementia and paralysis if I didn't. I had already developed dementia type symptoms and pins and needles in my spine.
Some UK forum members get extra B12 jabs from a private GP or beauty salon. Some try high dose oral B12 (1000mcg or higher) but this doesn't work for some, didn't for me. Some as a last resort turn to self injection (SI). There is a pinned post that mentions SI.
More B12 info in pinned post "Various PA/B12D resources".
Help for GP
Might be worth pointing these out to GP/specialists.
1) PAS website has a page for health professionals.
They can join PAS as affiliate members, no charge.
Thank you very much for all the info. The GP has diagnosed B12 deficiency from low B12. However, after my 6 loading doses, he says I don't need anymore. I have to have another blood test of Friday and then have a call with the GP 2 weeks after
"he says it's diet related so I don't need more injections. I just can't understand how they can say that when they won't even listen to my diet so they have no idea"
You mention that your GP thinks your B12 deficiency is diet related.
Do you think it's diet related?
Might be worth writing out a typical weekly diet, all food and drink to discuss with GP.
Consider including a diet list in any letter you write if GP still doesn't pay attention.
Circle any B12 rich foods eg eggs, dairy, meat, fish, shellfish, foods fortified with B12 eg some breakfast cereals, some non dairy milk substitutes etc.
My understanding of UK guidance on B12 deficiency is that if neuro symptoms are present (you list many neuro symptoms) the recommended treatment pattern is
a B12 loading injection every other day for as long as symptoms continue to improve (could be weeks even months of every other day injections) followed by maintenance B12 injections every 2 months
As far as I know (I'm not medically trained) this treatment pattern applies whatever the cause of the B12 deficiency even dietary B12 deficiency.
If GP says they are not aware of this treatment pattern then you could ask them to look at their BNF book Chapter 9 Section 1.2 or to look at online BNF entry for hydroxocobalamin in the Indications and Doses section.
It gives a letter template for writing a letter to GP when you think you are being under treated for B12 deficiency with neuro symptoms present.
If you're seeing your GP in a couple of weeks time, it might be worth writing to them before appointment with your concerns.
Letters to GP
They could contain some of the following but keep them short. I think GP is more likely to read them if short. Always keep a copy for yourself. GP surgeries are supposed to file letters written to GPs with your medical notes.
1) Symptoms list (see PAS checklist in one of my other replies).
2) Blood test results
3) Relevant personal and family medical history (eg do you have relatives with PA)
If you haven't already, try to track down the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England (Health Board in Wales/Scotland). Your GP is probably looking at these guidelines to help with diagnosis and treatment.
Search for "name of ICB/Health Board B12 deficiency guideline" or "name of ICB/Health Board B12 deficiency treatment algorithm". If you can't find them online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Some of these local B12 deficiency guidelines are not as helpful as they should be. See blog post below ...I hope you are not in this area.
As well as reading this document "NICE CKS Anaemia - B12 and Folate Deficiency"...it's a good one to quote from if you write to GP, I also suggest reading this one when you have the time and energy
If you haven't already, try to work your way through all the links I posted in other replies. Take a few days to do this as there's lots of info to digest.
Some UK forum members turn to treating themselves when NHS treatment is not enough. Some get extra b12 injections from private GPs, some try using high dose oral B12 (1000mcg or higher) and some as a last resort turn to self injection (SI). There is a pinned post that mentions SI.
Wrong ideas about B12 deficiency
Many of us on this forum have met health professionals including GPs and specialist doctors who are lacking knowledge of B12 deficiency.
These articles mention some of the common wrong ideas health professionals can have about B12 deficiency.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
The Nervous System is complex but I love simple. So one part is the Central Nervous System - the Brain and Spinal Cord.
So these are your neurological symptoms :-
* Change in taste ( Olfactory nerve - taste and smell - Cranial or Brain Nerve number 1).
* Vision disturbances ( Optic Nerve - Cranial or Brain Nerve number 2)
* Tinnitus (Cranial Nerve or Brain Nerve number 8)
* Migraine ( Keep this one simple - it is your brain).
* Brain fog/forgetful/memory problems (cognitive or brain’s functioning)
* Anxiety (regarded as neuropsychiatric symptom but part of the brain is called the limbic system.)
*Weakness (can be because nerves are not ‘firing’).
*Trouble walking/heavy legs/restless legs (signals from the brain, down the spine into legs are a bit ‘haywire’).
*Palpitations (nerves to heart can be impacted)
The following 3 can be because the outer coverings of nerves has a special name (myelin) and vitamin B12 makes that covering. So, are still neurological symptoms :-
*Pins & needles/tingling/lack of feeling in arms (not totally numb but the touch doesn't feel the same)
*Burning in arms & legs
*Chronic body pain
If you can take a snapshot. The above is mainly basic anatomy. 👩🏽⚕️
I have many of these symptoms still and I have been self injecting every other day for over a year as do many others on this site. I also have hypothyroidism (under active thyroid) and often the 2 go hand in hand. Ask you GP for thyroid test just to check it’s ok
I was classified with B12 Deficiency with Neurological symptoms and put on the two monthly injection protocol.Afterctheir months this was changed to six weekly after my symptom diaries for the Neurologist proved the pattern of my neurological and cardiac symptoms increasing around the end of week 5 after each of my B12 injections.
Any injection timetable shorter than 2 months on the NHS usually requires a person to have this recommended by a Consultant, most GPs will not give injections within less than eight weeks without a request from a Specialist.
My symptoms are:
Body Tremors
Muscle weakness and Numbness ( parathesia) especially on activity
Loss of body coordination and Balance
Visual Disturbance
Increased number of Migraines and Cluster Headaches
Slurred Speech
Extreme Vertigo
Dizziness
Increased symptoms of Autonomic Dysfunction and Tachycardia
Spasms , particularly eyelids , lower arms and feet
Gastric spasms
Extreme Brain Fog and loss of thinking skills and memory
Increased Restless Leg Syndrome
Increased Tinnitus , including pulsating Tinnitus
Trouble Swallowing
I have many other symptoms but these are the ones that are classed as Neurological in my case.
Many of my symptoms apart from things like the spasms , tremors and muscle numbness are part of other illnesses but are made much worse by the drop in B12 levels.
Spasms and Muscle Tremors ( Parkinsonism) , Partial Amnesia , Vertigo on Standing. Slurred Speech, Swallowing issues and Extreme loss of control of my joints on moving are all part of my B12 Deficiency alone and we're made much better by B12 treatment.
"this was changed to six weekly after my symptom diaries for the Neurologist proved the pattern of my neurological and cardiac symptoms increasing around the end of week 5 after each of my B12 injections"
You make a good point about symptom diaries.
Kma123, maybe you could keep a symptoms diary. Perhaps track up to ten symptoms, score severity daily or weekly and note date/amount of any treatment given. Could be useful evidence of any deterioration or improvement in symptoms to show doctors. Look for patterns.
It is vital to keep a diary if you want any chance of getting the most regular B12 injections you can get through the NHS and ensuring that your full symptoms and diagnosis are properly confirmed in your medical notes so you can't get them making UTurns on your treatment later.
It obviously does take longer to have the symptoms under good control than it does to start self injecting early on , but if you have extreme symptoms, or other illnesses as well , like I do, having to fight for what you need can be a lot harder and they won't take anything you say at face value.
They had to see how bad I was to be willing to make the changes to 6 weekly injections.
Hi, some wonderfully helpful comments here. Just wanted to add, print off the NHS, NICE and any websites you find helpful and show them to the doctor instead of just listing your problems.Best of luck 🤞
The majority of ALS patients were found to be B 12 deficient causing severe malabsorption. Recent studies may have identified the cause which is usually related to liver abnormalities resulting in malabsorption. The blood tests for liver disease are only 15% accurate which is why a serious condition may not be diagnosed correctly. Fatty liver becomes progressive if not treated with a low carb meal plan. Changing dietary habits can completely reverse fatty liver. doi.org/10.3390/genes13060936 Meat products, the source of B 12, are the most difficult to digest when liver disease is present. Try eggs and fish, both sources of B 12.
I can confirm I have had all those symptoms on too little B12. So I wasn't taking enough b12. I was on twice weekly injections when I experienced all those symptoms. I am on daily injections now and many of those symptoms come back with a vengeance when my dose is lowered.
Idk if this applies to you, but I had a very subtle difficulty taking a deep breath/chest tightness that I didn't even realize was B12 deficiency related until I started getting regular injections and it improved drastically. Very insidious.
Best of luck to you, good job doing your own research!
Thank you. GP is saying I have a definite deficiency but he says it's diet related so I don't need more injections. I just can't understand how they can say that when they won't even listen to my diet so they have no idea! I'm not sure if it's coincidence but a few of my symptoms did seem to start improving after the initial 6 injections however they're now back with a vengeance
Hmm, that is definitely troubling!! Assuming is never good, and in regards to medicine and someone's personal health, it can be downright dangerous. I would ask to have your intrinsic factor tested for antibodies, and if this GP is unwilling, seek a 2nd opinion. Especially because you mention that some of your symptoms which improved slightly while receiving B12 injections are now much worse, it makes me suspicious that you are regressing because you no longer have the intramuscular B12 going straight into your bloodstream.
When I got diagnosed with PA, my GP initially had authorized like 5 injections and then because she was inexperienced, she retested my serum B12 after 2 injections, saw that it was super high and cut me off. I felt HORRID. I had to work hard to show her all the evidence/medical papers laying out that I needed more B12, and would need it for life, but she listened eventually. She didn't understand initially that my body couldn't recycle the B12 in my blood because my body attacks my intrinsic factor. It stinks to have to lead the charge, but your health is worth it! Hang in there Kma123!
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