2 months 3 months

[steveb12]

What symptoms would be considered to indicate neurological involvement?

In order to be prescribed 2 monthly injections one needs to present with some symptoms on the Neurological level.

[clivealive Forum Support]

Hi steveb12

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following neurological symptoms:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

[steveb12 in reply to clivealive]

I presented short term memory loss and numbness and tingling in arms and legs.

I was told this is normal for B12 deficiency and would clear up in time

This doctor told me in 17 years she had never prescribed or known any other doctor to prescribe anything other than 3 month injections.

[fbirder in reply to steveb12]

Did you ask them to read the second paragraph in the BNF. Do it there and then, in your presence. That was the only way I managed to persuade a know-it-all nurse that 8-weekly jabs were OK.

[Sleepybunny in reply to fbirder]

Next time I see my practice nurse I might take my own copy of BNF info.

evidence.nhs.uk/formulary/b...

"doctor told me in 17 years she had never prescribed or known any other doctor to prescribe anything other than 3 month injections"

Very surprised that the doctor has never prescribed 2 monthly injections for those with b12 deficiency with neuro symptoms.

I wonder what pattern of loading doses, is prescribed at that practice for those with b12 deficiency with neuro symptoms?

UK B12 treatment info including that for those with neuro symptoms is also in "BSH Cobalamin and Folate Guidelines" about a quarter through document.

b-s-h.org.uk/guidelines/gui...

[steveb12 in reply to Sleepybunny]

My loading does was 6x shots over 2 weeks.

My doctor agreed to give me a blood test after 8 weeks to see if i need more B12 before the usual 3 month shot.

[Sleepybunny in reply to steveb12]

In UK B12 loading doses for someone with B12 deficiency with neurological symptoms is an injection every other day for as long as symptoms continue to get better.

They can check this in

1) BNF Chapter 9 Section 1.2

2) "BSH Cobalamin and Folate Guidelines", a quarter through document.

You seem to have been given the standard treatment for B12 deficiency without neuro symptoms.

Have you asked GP what the pattern of treatment is for someone with neuro symptoms?

Memory loss and tingling would usually be considered neurological. Did you have any neuro symptoms before you were given loading doses?

I gave my Gps a copy of PAS symptoms checklist with all my symptoms ticked plus I added any of my neuro symptoms not on PAS list.

pernicious-anaemia-society.... see Symptoms Checklist

[jillc39]

I had nearly all the neurological symptoms listed by clivealive - but now after 18 months of fighting (and screaming) I am having once a week b12 and the symptoms are fading even as we speak. Seeing gp today and have fingers crossed that the frequency will continue. I rage inside for the dreadful months of pain and fatigue etc I had when I was told 'no one in this practice has b12 more frequently than every three months'. I cant think of how I would be now if I had accepted that.

[Hidden]

One of the problems I have with this is I am taking anti-hypertension medication which also has the side effects of tinkling hands and feet. They have been the focus of dealing with it. Although my B12 deficiency regimen is for injections at 12 weeks I self inject and have an annual supply of 5 ampoules so using those I can have injections every 10 weeks.

This is one reason why I was so very concerned when it looked as if the surgery were changing their policy and only issuing single ampoules every 12 weeks - no solved.