Did you have neurological and/or neuropsychiatric symptoms and have you recovered?

To what extent did you have neurological and/or neuropsychiatric symptoms?

Since vitamin B12 is essential for the functioning of the nervous system, neurological symptoms are almost always present in a deficiency. More than 61% of the patients experience these symptoms as serious or very serious. It is precisely these neurological symptoms that can be irreparable if it takes too long for the deficiency to be diagnosed and treated. It is therefore crucial that in the presence of these symptoms
vitamin B12 is tested at an early stage and the treatment is started as quickly as possible if a deficiency is found to be present. It still takes too long before treatment is started, with all the consequences that entails.
Patients who had no, or mild neurological symptoms recovered better than patients with (very) serious neurological symptoms.

Have these symptoms improved?

If we only consider the patients with very serious or serious neurological symptoms at the time of the diagnosis (1100 patients) we note the following:

Only 9% had symptoms for less than 6 months. Scientific literature indicates that if neurological symptoms are present for longer than 6 months, there is a (large) risk that these symptoms will not (completely) disappear.

Almost 80% had symptoms for more than a year and 35% of the patients even had symptoms for longer than 5 years before diagnosis. It still takes far too long for a vitamin B12 deficiency to be considered as a possible cause for neurological symptoms.

Over 80% of the patients with serious neurological symptoms had a B12 value which was clearly too low and 43% had values below 100 pmol/L. 25% of these patients, with a clear deficiency (value below the 100 pmol/L) and with serious neurological symptoms had to wait unnecessarily long for treatment with obvious consequences. None recovered completely and more than 40% had no or only some improvement.

Also 25% of the patients with severe neurological symptoms were not treated immediately after the diagnosis, which increased the risk of irreversible damage. Over 30% of the patients with (very) serious neurological symptoms before treatment still have many neurological symptoms despite the treatment.

Only 7% have recovered completely. That percentage is a bit higher for patients who had symptoms for less than 2 years prior to diagnosis (11%). Approximately 8% experienced no improvement of symptoms at all.

The shorter the symptoms existed prior to diagnosis, the greater the chance for a recovery.

The sooner the treatment was started, the greater the chance for a recovery.

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