Is a Burning Tongue considered to be neurological damage?

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Hi...My tongue has been swollen and burning for a while now.  I've also had a lot of other symptoms that suggext a B12 deficiency, but my blood tests for B12 are normal and my doctor won't consider treatment.

What would be a normal dose of injectable B12 where there is neurological damage?  Somebody suggested one injection a week for a month, but I thought I'd read elsewhere that where there is neurological damage, the dosage was one injection every second day for one or two weeks, then an injection every two or three months.

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  • Posted

    Hi ester, I see that your Doctor has said the B12 tests are normal, did he tell you what the level was? Some Doctors will only treat it as a deficiency if you are below 200, but others consider anything below 500 to be a deficiency. Usually we get loading doses of six injections over two weeks, then doctors send you for another blood test to see how much of the injected B12 remains. Then they decide if you can go on to the three monthly top-up injections. Even though I have continuing neurological symptoms, I have been unable to persuade my GP to give more frequent injections. There are ways of supplementing using sprays (nasal or under tongue) and patches. Tablets will only work if you don't have problems with your absorption via your gut. Lot's of us do have that difficulty, unfortunately.  Hope that you get some help. Best wishes Marion
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  • Posted

    Thanks so much Marion. That's just the info I needed. Might have to resort to buying my own injections if the self dosing doesn't work.  

    smile

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  • Posted

    Please ask for a copy of your blood results. Some labs have their normal range as low as 120. Under the bcsh guidelines for b12 deficiency 200 is considered deficient but with neuro symptoms treatment should not be delayed even within normal levels. Treatment with neuro symptoms are alternate day injections of hydroxocobalamin until no further improvement then every 8 weeks. This is also stated in the British National Formulary (FNB). If your folate is low your b12 result can be falsely high. B12 needs folate to metabolise into your cells to do repair. If folate is low the b12 cannot metabolise effectively causing falsely high b12 blood test results. Also consider functional b12 deficiency where a deficiency shows normal b12 serum results. Look up functional b12 deficiency. Also ferritin (iron stores) are important. Once b12 has metabolised into the cells the body uses ferritin to produce new blood cells. If either b12, folate or ferritin is low this process is compromised. Look up bcsh guidelines on b12, NICE guidelines on b12 and functional b12 deficiency.
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  • Posted

    Thank-you Heather.  I am as white as a sheet also.  Would the injections every second day continue until the tongue swelling goes away?  I've started self-dosing and taking 5mg of folic acid a day, but am wondering if self-dosing could get rid of the swollen tongue.  I'm taking 4 doses of transdermal B12 daily.  
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  • Posted

    Not sure.  Have this tingling in my tongue and a funny feeling sometimes in my left foot.  The only way I can describe it is that I can feel it if I touch it but it feels numb if not being touched.  I haven't been able to work out if it's a B12 thing or nerve compression.  I've had other symptoms a while back such as tired arms and legs that improved when I increased my B12 supplementation.  I went to my doctor at the time and was just sent home with no answers.  That's when I increased my B12 dose and it worked.  
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    • Posted

      These are typical neuro symptoms due to damage to your nerves caused by b12 deficiency. Did you have a b12 test before supplementing b12? Do you know the results?
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  • Posted

    I get regular B12 tests, perhaps because I have diabetes.  They've been well above normal for years, but I take vitamin tablets and they contain B12 which must pump my readings up artifically.  I have a myriad of health problems including malabsorption and can't stop taking the vitamin pills.  The transdermal B12 I take just keeps me functioning, although below par I must admit, but it does nothing for the swollen tongue.  I showed my swollen tongue to my doctor and was told it wasn't typical of B12 deficiency but he can't tell me what else it could be.  When I said that taking extra B12 had got rid of my tired arms and legs after a few days, he said: "B12 doesn't work like that".  Why do doctors refuse to listen to their patients?  They're the one going through it all and know what works and what doesn't.
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