Symptoms increase following b12 injections

[Lnorris232]

I was diagnosed with b12 deficiency 143 low. In have had sever debilitating neuropathy, wide spread pain,fatigue, joint pain, night sweats, and brain fog for almost five years now. Each month the symptoms seem to get worse. I finally found a neurologist who took some interest in my problems and was concerned enough to start many tests right away. What she is most concerned with at this point is that my b12 is very low. She referred me back to my PCP to start injections. I had a large dose last week, then I am to have more blood work before they decide the amount and frequency of my injections. Since that day I have felt awful. I do have a symptom that I have not found mentioned and wanted to see if anyone else experience severe mouth and tongue sore following b injections? I feel as if I have taken my tongue and cheeks to a cheese shedder. This has been that way for almost 5 days, makes it very hard to eat anything.

[Gambit62 Administrator]

Unfortunately it isn't uncommon to feel worse before you start to feel better if you are recovering from a severe B12 deficiency.This is a link to the BCSH guidelines on cobalamin (B12) and folate disorders.

onlinelibrary.wiley.com/doi...

As you will see the normal treatment in the UK for b12 deficiency with neurological involvement is somewhat more aggressive than the treatment you are being given

The AAFP refers to these guidelines in its guidance on B12 deficiency

aafp.org/afp/2017/0915/p384...

May be worth discussing these with the neurologist and PCP, particularly if they say that you don't need any more treatment because your levels are sky high. It may be that the tests are looking at whether you have PA as the cause - in which case you should be aware that IFAB tests can't be used to rule out PA - only to confirm it - as they have a very high rate of false negatives (40-60% depending on the exact test method). It may be that the tests are further investigations of other areas that could be causing your symptoms.

[Nackapan]

My daughter had mouth problems with low folate which often accompanies low b12 It is a good sign you are reacting.

Tough going, i had a difficult time getting much worse before improvements.

Blood levels of b12 not needed .

Also should not dictate regime .

Keep going on a regime and note symptoms . A rollercoaster. Hope you turn a corner soon.

[MariLiz]

An extremely sore mouth and tongue were one of my severe symptoms when I was first diagnosed. My tongue was also quite swollen, and I frequently bit the sides of it( accidentally) whilst eating.It took quite a long while until the soreness began to go.

I think the corners of the mouth can also get very sore.

[Lnorris232 in reply to MariLiz]

Thank you for your input. The mouth swelling and sires are the worst. I hope yours finally subsided with treatment.

[MariLiz]

Yes, it did eventually subside. I still occasionally get blood blisters in the roof of my mouth. No doctor has been able to explain what causes these, or find a cure. They do go away on their own, although I have used gengigel to ease the soreness, or daktarin anaesthetic spray ( which is really for sore throats). It just numbs it nicely. I hope your symptoms will ease soon.