The Diagnosis: the start of treatment

Literature states that if neurological symptoms are present for longer than 6 months the probability is large that the symptoms will be permanent with irreparable damage. Most people (86%) had symptoms for longer than 6 months before diagnosis. Of these, 22% had to wait longer than a month after the diagnosis before treatment was started, and 8% had to wait even longer than 6 months before treatment!
There is no reason to delay treatment after the diagnosis. Further testing to investigate the possible cause can also be done during treatment. The priority should be to start treatment as soon as possible in view of the risk of irreparable damage.

The need for quick and proper treatment is emphasized further by the fact that only 7% of the patients reported a completely recovery. A rapid diagnosis and treatment is a simple way to avoid irreparable damage and permanent symptoms caused by a vitamin B12 deficiency.
The chance of a full recovery is of course greater if the treatment is started immediately after diagnosis.
Fortunately most patients are treated immediately after diagnosis, but a large group had to wait for an unnecessarily long time: 200 patients waited for more than 3 months before treatment was started.

Even with a significant deficiency (a serum B12 value below 100 pmol/L or an Active B12 value below 20 pmol/L) 26 patients had to wait longer than 6 months before treatment, which entails an unnecessary and unacceptable high risk for permanent damage. None of these patients have fully recovered.

It often takes far too long for a B12 deficiency to be considered as a possible cause of the symptoms. It is obviously not well known which symptoms may be the result of a B12 deficiency. In only 27% of the people a B12 test was done within the first year of the manifestation of symptoms and almost 30% had to wait longer than 5 years for the diagnosis.

We regularly hear from patients that a doctor does not want to test for B12, because no anaemia is present or because the doctor does not believe that a B12 deficiency can cause their symptoms. The fact that a B12 deficiency can be (very)serious before there are any signs of anaemia has been known for more than a century. It is therefore incomprehensible to us that there are still so many doctors who insist on anaemia as being a prerequisite for a B12 deficiency. More information can be found here.

The costs of testing for vitamin B12 and for treating a deficiency are low. The benefits of the timely detection and treatment of a deficiency are potentially huge and not only financially.

Considering that neurological symptoms can be irreparable because of a long overdue diagnosis and treatment, early testing is of crucial importance.

The shorter the symptoms existed before diagnosis, the greater the chance of recovery. The faster the treatment was started, the greater the chance of recovery.

The longer the symptoms existed, the more serious the neurological complaints:

• < 3 months symptoms: 33% had serious/very serious neurological symptoms (40% none/mild)
• 3 – 6 months symptoms: 46% had serious/very serious neurological symptoms (18% none/mild)
• 6m – 1 year symptoms: 55% had serious/very serious neurological symptoms (16% none/mild)
• 1 – 2 years symptoms: 57% had serious/very serious neurological symptoms (13% none/mild)
• 2 – 3 years symptoms: 57% had serious/very serious neurological symptoms (12% none/mild)
• 3 – 5 years symptoms: 67.5% had serious/very serious neurological symptoms (7% none/mild)
• Longer than 5 years symptoms: 73% had serious/very serious neurological symptoms (6% none/mild)