Nerve Damage & B12 Deficiency

[scadman]

About 12 months ago, after a series of falls, I was tested and advised borderline B12 deficiency, and advised a retest in 3 months and an appointment in the "falls clinic" at a local hospital By the time the retest was due I had developed constant tingling in my toes and fingers. I was immediately put on to loading doses of B12, retest showed a significant drop in the B12 level. a MMA ( I think that what it was called) test came back normal, and IFA was under 1, which was within an acceptable level. None of the blood tests have been repeated over the last 12 months.The hospital appt showed I had lost some feeling in my lower legs and toes, and possible nerve damage, he didn't advise any treatment or further tests at that time and would write to my GP. GP did not receive this, when I questioned it, she said best to monitor the tingling and pin and needles and if I thought it was getting worse to come back. The tingling and numbness in my toes never goes away, and gets significantly worse about 3-4 weeks before my next B12 injection is due ( every 12 weeks), When I mentioned this to GP she said just indicates B12 needs topping up, but to keep on the 12 week schedule. My concern is in that time the symptoms are getting worse is it causing more damage to the nerves in my legs?. I am thinking of seeing a different GP about this but not confident on understanding what I need to to be asking.

[fbirder]

Tell her it is getting worse and that you want to see a neurologist.

[clivealive Forum Support]

In addition ask your doctor to check your Folate level and also to treat you in accordance with the N.I.C.E guidelines for the treatment of patients with a B12 deficiency and neurological symptoms.

The relevant paragraphs read:

"For people with neurological involvement:

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months".

It may be that your loading doses didn't continue long enough.

I'm not a medically trained person but there are others on here who will give you good advice.

[GGourmet]

I'd have to agree with other posters. I have no idea why you have not been referred to a neurologist, because you should have been, in my opinion. Yes you most certainly should have injections every 2 months not 3 months, because you have neurological symptoms. I too have neuro damage but take methyl cobalamin daily, as well as the injections and this does the job.

In the early days, I was taking 6,000 microgrammes of methyl cobalamin daily as 2,000 microgrammes every 8 hours. Now, after 4 months, I have been able to reduce this to 2,000 microgrammes daily in the morning. I believe there are reports that in cases of neuro damage, Norway (I think) advises daily injections of hydroxycobalamin for 1 year. I cannot locate this report any more, so perhaps someone else on here knows of it. I feel that it reported after 1 year of treatment, neuro symptoms had disappeared.