Three months after starting treatment and still experiencing neurological symptoms

[drvicclarke]

Hi everyone, this is my first post. It took more than 3 months after first going to my GP for the practice to agree to a longer course of B12 injections (my B12 was under 150 treatment threshold, the IFA test was negative, but the Dr had no idea the test was a unreliable indicator of PA, I had a whole lot of different neuropsychiatric symptoms as well as tiredness). I have had a combination of injections of hydroxocobalamin from the GP and self-injections of hydroxocobalamin and more recently methylcobalamin from Oxford Biosciences pretty much every other day since the end of December. I still have symptoms - constipation, sleep disturbance (this was the first symptom I noticed about a year ago now), numbness in lower legs, symmetrical tinnitus, tremor and lack of power in right hand, foot drop in right leg, thick tongue - but they don't seem to be improving any more, or they are improving so slowly I'm not noticing. Any thoughts on whether I should keep going with the injections? Every other day or less frequent? The GP I saw most recently had just spent a year on placement in neurosurgery and he said give it a year to see if the symptoms resolve. Has anyone had symptoms linger for this long? I could barely walk in December, and had to crawl upstairs, so am feeling a LOT better, but the prospect of things not resolving completely is depressing.

[clivealive Forum Support]

Hi drvicclarke

It is also important that your Folate level is monitored as this is essential to process the B12 you are injecting..

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years and I had a 13 year gap between gastric surgery and the eventual diagnosis by which time I was a walking Zombie.

I am now nearly 77 years of age.

I wish you well

[Sleepybunny]

Hi,

I am still experiencing a very slow rate of improvement, several years after starting B12. Do you keep a symptoms diary? This may help you to track any improvement over a long period.