Conclusions from our 2015 Survey

Diagnosis

• The sooner diagnosis followed the first complaints, the greater the chance of recovery
• The longer the duration of complaints, the more serious the neurological symptoms
• Compared to the present day, 10 years ago slightly more people received treatment straight after discovery of the deficiency
• 10 years ago B12 came into consideration earlier
• 29% suffered from symptoms for more than 5 years before diagnosis

• The sooner therapy was started, the greater the chance of recovery
• 75% is being treated within a month after diagnosis
• 8%  had to wait more than 6 months for treatment
• 65% of patients receiving injections got the correct initial dosage
• The longer one is in therapy, the better the recovery

• 54% of people who were given tablets had serious or very serious neurological complaints
• 15% of those patients showed no recovery from symptoms and another 25% improved slightly
• 61% of those receiving tablets is satisfied with their present treatment
• Normal high dosed tablets: 35% little or no improvement, 40% good results but nobody recovered totally
• Methylcobalamin or a mix of methyl- and adenosylcobalamin is much more effective than cyanocobalamin
• Sublingual lozenges have (much) more effect than normal tablets

• Complete recovery for 7%
• 5% reports no improvement of symptoms
• Of those who had complaints for shorter than one year, 12% fully recovered, 34% largely and 4 % felt no improvement
• Complaints for more than 5 years: 5% fully recovered, 29% largely, 7% no recovery
• Patients with mild or no neurological complaints recovered better than those with (very) serious neurological complaints
• It still takes far too long before vitamin B12 deficiency is taken into consideration as possible cause of neurological complaints
• 25% of patients with serious neurological complaints did not receive treatment immediately following diagnosis
• 25% of those with an obvious deficiency and serious neurological complaints had to wait needlessly for treatment, with all risks involved
• Of these patients no one recovered and 40% no or little improvement
• Early diagnosis and early treatment are essential for neurological recovery

• 13% needs an injection every week or more often after more than one year of treatment
• 44% of those who are satisfied about their treatment get an injection varying from every month to every seven weeks
• 41.5% of patients partaking in the survey had a serum B12 level lower than 100pmol/L
• Of these patients 23% was not treated immediately, with all risks involved
• Out of 471 persons under 30 years 42% recovered fully or largely.
• Out of the 61% indicating that their treatment is sufficient 11% fully recovered and 43%  recovered to a large extent.
• Out of the 39% reporting insufficient treatment 1% fully recovered and 13% largely recovered
• The standard maintenance dose often turns out to be insufficient in practice