I saw a different Oral Medicine consultant very briefly last week, who told me that nerve damage was the cause of my constantly burning tongue - and then offered me Amitryptyline as a six-month pain relief trial. I refused the offer of this antidepressant, but missed the opportunity to ask the obvious question:
"...but what do you think caused the nerve damage ? "
To my mind, this has always been a B12 deficiency related symptom, one that has never gone despite frequent B12 injections. We all know that it's possible to have residual symptoms post treatment, but wouldn't it be nice for a consultant to say that first ? Then it is more likely to get a mention in the report to GP. On your medical record.
I wasn't quick enough, as I'd just been told that I would need a biopsy for a mass in roof of my mouth - which luckily turned out to be infection from an abscess from three years ago. Now hoping to save a few teeth by having a procedure (during which they will be able to proceed with the biopsy - meaning only one set of stitches).
So really just wanted to ask if anyone else had been told that their burning tongue "syndrome" was caused by nerve damage. Also whether they had managed to get their consultant to say the "B word" - or better yet, write it !
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Cherylclaire
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I was trying to get them to test haptocorrin in saliva, since I have a history of problematic saliva duct strictures causing saliva gland infection. They were looking into whether this was a thing at all, and whether the cost could be justified - whether knowing a problem exists (in this case, possible long- term compromised protection for food-sourced B12) could eventually result in a cure or an improvement.
The best I actually got from this new investigation was the consultant spoke to colleagues with some understanding of B12 deficiency - and changed his mind ! He no longer thought it a good idea to reduce my injections, nor trial tablets as these experts had told him that neither action would work for me ! Well, that's no small thing - but again, it failed to get onto the report back to GP surgery.
You're right. It would be a good idea to now get other B vitamin levels tested. Perhaps that is the next step - if they don't sign me off first. Not sure this was ever done by any of the consultants I've seen in the last 7 or 8 years.
My problems may not be fixable, but no reason not to keep trying as long as they are still open to taking this further. Shame I no longer have a usual GP at the other end to collate all the information and either help me or support me in helping myself !
Failing to be included on the letter to the G.p disappointing .I would ask on next visit for this to be done .
Pointing out you no longer are getting b12 injections prescribed.
The oral health consultant got advice and told you not to reduce b12 Injections or indeed bother with b12 tablets .
A prescription should be triggered by this.
( Always useful and will be on your medical notes )
I was told the same by a neurologist .
He didn't put everything said in the letter to G.p .but
he did include he hadn't read enough convincing evidence that high dose b12 tablets should be used.
Also b12 injections need to continue 2 weekly for 'this ' patient.
It was ignored initially by G.ps
However I think enough in the end to cover the back of GP trying to help me as 5 g.p colleagues opposed her and indeed woukd not sign repeat prescriptions.
When they were tried to be stopped again.
The new partner saw this letter in my notes and although only 18m 'old' asked another neurologists opinion .
He fortunately agreed with first one without seeing me.
So on next appointment ask for this to be included in the letter to G.p.
I realise always alot to try and remember.
My daughter had cracked lips.
Mouth ulcers .
A red sore tongue with whitish lumps that wasn't thrush.
It looked larger with jagged edges.
It did for her eventually heal but not back to how it was.
She only needs 10 weekly b12 injections .
She does need daily folic acid .
She thinks it's low folate that causes her mouth / tongue symptoms for her.
However going by the post on hair loss multiple reasons possible or a combination.
She also had infected salivary glands and tonsils. I'd forgotten this .
It was at the some time of something up with her neck.
Then vertigo!!
She was on alot of antibiotics that were essential but made her more ill/ dizzy
This was 5 years before her diagnosis when so much was going on health wise for her .
All Hindsight the connections.
Like you say try and get everything possible before discharged !
Did not have that issue but my hand tremor was diagnosed (onsight) by a neurologist as essential tremor. Which apparently has no cure? And gets worse as you age? Never mind the fact that I am not close to an age or have any kind of disability where any kind of nerve tremors might be expected.
A incurable condition which was almost completely cured in a year by intensive B12 treatment. Odd coincidence that. Very odd. 😆
The excruciating electric shock style nerve pains in my hands during initial treatment were probably also entirely coincidental. Or I was imagining them. Symptoms which oddly improved and eventually disappeared as treatment progressed. Truly very strange since I never had a "real" B12 deficiency. According to idiots who somehow have a license to practice..... one of the worlds mysteries.
Amytriptylin is an antidepressant and in lower doses is a first class way of dealing with my neuropathic pain. The only side effect is a small memory loss and I avoid that by taking one dose of 30 mg at 6 pm as it seems to take four hours to have that side effect so I am asleep then. By the time I wake, I no longer have the side effect and the pain relief persists.
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Vague nerve performance
