I paid to see a Neurologist recently as I haven’t got anywhere with GP’s. He said my symptoms were not those of B12 deficiency even though I have numbness and tingling in hands, heart palpitations, muscle aches and weakness, fatigue, brain fog and feeling lightheaded! He said if it were B12 deficiency I would have numbness in my feet as well, so he said I have carpal tunnel syndrome. Is this correct? Can you have numbness/ tingling in hands and not feet?
I feel very angry that I will have to pay for this Neurologist when he just dismissed most of my symptoms as ‘irrelevant’ and unrelated! He just referred me for a private nerve conduction test. I have been diagnosed with gastritis and anaemia this year. My B12 was 264 in April, but as this is in range, both Neurologist and GP’s say it is ok. 🤨 I am taking oral supplements which help with fatigue. Thank you for any help.
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It can be hit and miss. Does carpel tunnel syndrome explain all of your symptoms ?
My feet were my least concern over other symptoms.
Why did he / she not do any basic nerve testing?
I saw 3 neurologists .
All had different opinions and drug options and completely opposing views of PA and b12 deficiency.
Only one gave another possible cause.
Migraine and post concussion syndrome.
One by chance as went for migraines and balance issues had b12 deficiency himself so had read up for self interest. He also coukdnt manage on 3 monthly injections.
He disagreed on ladt two with type of migraine and drug.
All you can do is keep going to eliminate other causes for your symptoms
It was my G.p that sent me for a brain mri scan.
To date for me no other cause was found.
I did have a low B12 serum test result so was prescribed b12 injections.
Then it got confusing as I got alot worse before better.
Just because you pay a medic, doesn't mean you'll get a good one, sadly.
People are all different and experience similar but not always the same symptoms. Yes, usually your feet are affected too, and usually worse, but with your low test result and other symptoms it would be wrong to rule it out.
It looks like doing your own jabs might be a way forward. Be careful with the first one in case of extremely rare anaphylaxis.
I've known friends do them in a hospital car park so they can readily get help if needed - but they've all been fine.
See Wedgewood's excellent posts and replies for information on ordering your own ampoules and kit!
I did have one injection in June, a locum prescribed it, and I was fine. But one obviously doesn’t do much if you are very low. I will look into ordering some ampoules. Thanks 🙏
I’ve had this happen to me. Had the nerve conduction test, everything was fine, mri was fine. The doctors won’t encourage B12 injections, as they can’t make a profit with a vitamin. I self inject and slowly getting better.
It doesn't sound as if neurologist was as thorough as he could have been.
I saw several neurologists and only one thought B12 deficiency might be a possibility...I had over 50 typical symptoms affecting multiple body systems with many neuro symptoms.
"He looked into my eyes, asked me to touch my nose then his finger etc and he tested my relexes."
I'm not medically trained but I would expect a neurologist to thoroughly check proprioception sense as part of ruling out B12 deficiency.
Proprioception is awareness of where the body is in space.
If you have time, search online for "proprioception B12 deficiency" for more info.
Don't do these tests at home.
They should only be carried out with a doctor present due to risk of injury from loss of balance.
Two tests that can help to diagnose problems with proprioception are
1) Romberg test
I searched online for "NHS Romberg test" and "Romberg test B12 deficiency".
2) Walking heel to toe in a straight line with eyes closed
There are videos of these tests on Youtube and other tests that check proprioception/other neuro symptoms.
A person with proprioception issues can probably walk well in a straight line with their eyes open but when asked to repeat this with eyes closed will struggle.
If your neurologist didn't do any tests with eyes closed then I doubt very much that proprioception has been fully tested.
The reason I tend to go on about proprioception is that there is an association between proprioception problems and B12 deficiency in some research articles.
If your balance is worse when
1) your eyes are closed
2) it's dark
3) your view of your surroundings is blocked
that to me (I'm not medically trained) is suggestive of possible proprioception problems.
Thankfully my symptoms were not as severe as some.
I experienced the following which I think were suggestive of proprioception problems
1) falling off the pavement if someone walked directly towards me and blocked my view of my surroundings
2) being very wobbly if I had to go outside at night or if light levels were poor
3) misjudging position of things on shelves which sometimes led to broken crockery
Search for "proprioception B12 deficiency" and "SACD proprioception B12 deficiency" for more info.
I've also come across articles that suggest folate deficiency may be associated with SACD in some cases. I think this is rarer than SACD associated with B12 deficiency.
Search for "proprioception SACD folate deficiency".
"He just referred me for a private nerve conduction test"
A nerve conduction test may not pick up all forms of neuropathy (nerve damage).
Might be worth asking if test will pick up small fibre neuropathy (SFN).
My understanding is that to diagnose SFN a skin biopsy is needed.
Search online for "uk diagnosis small fibre neuropathy" for more info.
"I feel very angry that I will have to pay for this Neurologist "
I empathise, I paid hundreds of pounds I could ill afford to see specialists and most of the appointments were a disappointment.
"My B12 was 264 in April, but as this is in range, both Neurologist and GP’s say it is ok"
Look up this article "Turner SACD functional B12 deficiency" and maybe give it to doctors next time they say your B12 is okay.
I'm not a health professional but I would say a serum (total) B12 result of 264 is not okay if you are symptomatic for B12 deficiency.
Blog post about being symptomatic for B12 deficiency with normal range serum B12
When my symptoms were at their worst with pins and needles in my spine and dementia symptoms, I had serum B12 results well within normal range.
If I had listened to my doctors and neurologists at that time, I suspect I would by now have developed permanent dementia and paralysis and be in a nursing home.
If you haven't already, you might want to look into Functional B12 deficiency.
This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops deficiency symptoms.
MMA, Homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose functional B12 deficiency. The results of these tests may be affected if someone has had B12 injections or supplements recently.
I left links for people struggling to get adequate treatment in this thread Patient Safety
Do an online search for his name and B12 deficiency and it will show other articles he's written.
In the end after years of trying to get a confirmed diagnosis of B12 deficiency, I realised I was on my own and was forced by circumstances to treat myself. I did get some B12 treatment from NHS years later.
I left some detailed replies in this thread which might be of interest
Thank you so much Sleepybunny. I will read all of the links you have sent but it is so nice to hear that I am probably right and the doctors are wrong 🥰
If you're feeling overloaded with info, perhaps you could read a bit every day over a couple of weeks.
I'm not medically trained and my comments are often based on my own experiences and what I've read about B12 deficiency.
I think it's important to keep an open mind. Doctors can be right sometimes even if patients don't like what they say.
If I don't agree with what a doctor says I will go away and think about it and do my own research and then try to have a discussion with them. I have also in past written short letters with queries about diagnosis/treatment.
"He said my symptoms were not those of B12 deficiency even though I have numbness and tingling in hands, heart palpitations, muscle aches and weakness, fatigue, brain fog and feeling lightheaded"
Have you written a list of all your symptoms to pass to doctors?
I think it's helpful to include every neuro symptom and definitely any that affect spinal area.
I used PAS list below and added extra symptoms at bottom.
I exhausted myself trying to get my doctors to confirm B12 deficiency for several years when symptoms were at their worst...I had folders of info and copies of letters I'd written but they still wouldn't treat me.
I also tried to get them to exclude other possibilities with similar symptoms eg
thyroid disease
Lyme disease
I wished I'd started to treat myself sooner.
Apologies for repeating anything you've read elsewhere.
I think it's worth reading these documents if you have the time and energy or getting a helpful friend/family member to read them if you haven't.
1) "NICE B12 deficiency guideline" (published March 2024)
I have concerns about this document...in my personal opinion there's too much emphasis on treating with high dose oral B12 rather than B12 injections but it does have some good bits.
Some of the symptoms your neurologist said were not related to B12 deficiency are mentioned in this document and in ones below.
PAS article about new NICE B12 deficiency guideline
2) NICE CKS Anaemia B12 and Folate deficiency (published a few years ago)
Some of the guidance in this differs from that in new NICE B12 deficiency guideline
3) BSH Cobalamin and Folate guideline (published 2014)
4) Try to find local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland.
If you can't find them online, best bet is to submit a FOI (Freedom of Information) to your ICB/Health Board asking which B12 deficiency guidelines they use and for a link to or copy of them.
Some of these local B12 deficiency guidelines are not as helpful as they should be.
Thank you so much Sleepybunny. I have read some of those links but not all of them, so I will gradually look into those. I have written a letter to the GP surgery saying I am frustrated by the lack of diagnosis and treatment, which they are looking into, and I will see what the NCT throws up too.
Hi, just a note for info that biopsy isn't often available for small fibre so thermal threshold testing is used and can be diagnostic. The biopsy isn't always infallible anyway. My experience has also been that neurologists know very little about B12. Cheers
Thanks for that. I think you are ok if near London and can be done promptly by an experienced team, but those of us in the outer reaches don't have access (like Manchester for example)
At least if you have the nerve conduction test it will tell you whether you definitely have carpal tunnel or not. It will also give you useful information about whether your long or short fibre nerves are functioning correctly. So a very useful test to have.
Hi, I'd agree that the test can be useful but it is not helpful for small fibre neuropathy as the nerves are too small to be measured in this way. As I had evidence of both I had thermal threshold testing as well as NCS. The NCS looks at large fibre and the thermal gave me my SFN diagnosis. Carpal can have a number of causes/contributory factors and wouldn't rule out thyroid or B12.
In general if your ncs and mri are normal by exclusion the Dr then diagnoses small fibre neuropathy. That’s good you got the extra test to absolutely confirm it.
Sadly the neuro then said that SFN is rarely B12! Luckily for me others disagreed and the jabs are making a slow improvement to neuropathy and other symptoms. Just need to be patient and see how much improvment is possible after all these years....
I don't know, sorry. Mine was done by North Manchester and I was told that that was the only hospital in the area but I see that Manchester Royal also do them. I suppose you could phone BUPA, Spire, Nuffield etc and ask.......Hope you can find somewhere.
Just from personal experience then yes, you can have issues with hands earlier than feet. My hands and arms preceded significant foot problems by several years. The feet caught up eventually and I was numb to the knees by the time I got injections. With that range of symptoms then injections would seem needed - you know that you are getting some benefit from oral so your metabolism clearly isn't getting the B12 it needs, but oral is unlikely to be adequate and you may continue to worsen, albeit slower than you might have done (as I did). Cheers
Thank you so much bookish. I agree that oral supplements can only help a little but yes, it proves that my metabolism isn’t getting it from my diet, which is a normal diet.
Bear in mind that the neurologist may well be right about you having carpel tunnel syndrome, but that doesn't mean you haven't got other ailments too. From my experience, your symptoms would usually be limited to one hand and forearm. You could buy a brace off Amazon which you can just wear at night to see if that helps. My guess is that it wont. There is obviously something else going on in your body that is causing all your symptoms and your borderline B12 result would suggest that B12D should be considered. Did the locum's B12 injection help at all? If it did, then make sure your doctor knows this. If he wont help, then you could try daily 1000mcg cyanocobalomin tablets. Did you get your serum folate measured too. This can cause similar symptoms to low B12 and should preferably be in the upper half of the range while you are supplementing B12. I have no medical training.
Hi - may I please recommend Vitamin B6 for carpel tunnel syndrome - I take Nature's Best 50 mg of B6 and I have proved it also works on reducing homocysteine - having had a blood test which showed high levels then three months later having another test and they had reduced to very low levels. It also gives you great energy levels.
Thanks. I do have a B6 complex but I bought a high potency one 100 mg (mistake I know) so I am worried that it might cause numbness and tingling, if you take a high dose for a long time so I am only taking it twice a week. I will look at the Nature’s Best one.
Thank you Budsa. I think the injection did help a little for a couple of days. I expected it to be longer lasting tbh. I will mention that to the GP thanks.
My serum folate was 8.61 ug/L in February, 8.57 in May and 6.39 in August after I started the oral tablets in July, so it decreased and is just in range which is over 6.13. I am taking Methylcobalamin 1000 ug. I have information overload so it is difficult to understand all the numbers 🙃
Sorry to add to the overload, but serum folate can be high in range with B12 deficiency because you can't use it effectively in the cells. I was taking a total of 15000 mcg B12 daily in different forms - methylcobalamin, hydroxocobalamin and adenosylcobalamin, and formats - sublingual, spray, oral, patches. So you have some room to increase supplementation although it would be far better to get more testing done first and I wouldn't recommend taking that much methyl alone. Hopefully your doctor will help. One injection alone cannot rectify a long-standing absorption problem - you need many injections and it may take a long time to reverse as much damage as is possible. The important bit is that you got a reaction - if you had been B12 replete, you would not have responded. My first jab sent me to sleep for 4 hours.
264 is a borderline deficiency. Sally Pacholok would say it was still low. You want to be above 500.What you need to know is if the pills are making a difference, or if you really need injections. Especially before going for any surgery, because anaesthetic can wipe out your B12 stores and then you can fail to recover, without sufficient B12 in your system.
A really simple test to see if it is B12 is to try some loading doses of every other day B12 injections to see if your symptoms improve. The symptoms sounds like a B12 problem to me. The face that your supplements are helping could be a clue, but many people can't get enough from them. Make sure with supplemental B12 you are taking at least 1000mcg and sublingual.
I had carpal tunnel surgery on my left hand and was told to wait six months before doing surgery on my right hand. This was during very symptomatic B12 deficiency phase (even though I was being administered Hydroxocobalamin B12 via my clinic every three months). I wasn’t walking properly, pins and needles in my hands and feet, dizziness, heart palpitations, insomnia, the list goes on. Not one doctor ever thought that my symptoms were related to B12 deficiency (I had been diagnosed with PA three years prior). Countless specialists appointments failed to flag my symptoms and pathological results indicating megaloblastic anaemia and high homocysteine in the dangerous zone (even though my results were flagged in bright red and out of the ranges). I was always sent home feeling deflated and crying. I was always sent home with a script for an antidepressant. My nerve conduction test was normal when I then asked the person conducting this test if there’s anything to explain my pins and needles for which they said, that’s small fibre neuropathy for which we can’t test for’.
I was determined to get to the bottom of all my issues and symptoms and began to correlate all my pathological results, I myself, came to my own conclusion of a malabsorption of B12 (and probably of other nutrients and vitamins). Armed with all my information provided by my research and by this forum and the Pernicious Anaemia Society, consulted with my GP. He also agreed with me and then was very surprised and also supportive to begin my journey of self injecting with Methylcobalamin B12. My gastroenterologist was also surprised that I made this correlation and she apologised for not making this connection, after complaining of my symptoms for many years.
To this day, I am finally on the improvement of all my symptoms with the exception of a few maybe permanent symptoms for which I hope may improve with more long term treatment (I’m not holding my breath for). My daily B12 treatment WILL NOT EVER BE STOPPED no matter what any doctor tells me. In hindsight, I am so grateful for all the valid medical information given by this forum and PAS. This has truly saved my life. Thank you all.
I would definitely ask for the small fiber neuropathy biopsy and insist on the b12 injections! If they deny you , then unfortunately you need to move on to the next doctor that will hopefully not gaslight you … sending you luck and prays
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