We know that there are serious failures concerning the tests used to diagnose Pernicious Anaemia. And we also know that patients face a long journey before they are eventually told the reasons for their symptoms – 33% waited over ten years before being diagnosed.

Nerve damage

Left untreated Pernicious Anaemia can and does lead to nerve damage which leaves the patient permanently disabled; some seriously so. Although there is some evidence that Methylcobalamin repairs damage to the Myelin Sheath that is responsible for ‘speeding up’ nerve signals and which may have been damaged due to lack of B12. Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia (SACD) is a serious condition but, unfortunately, not always on doctors’ radar. Often, patients with nerve damage resulting from their Pernicious Anaemia being diagnosed late will be suspected of having Multiple Sclerosis which leads to several expensive and often unpleasant tests before the true nature of their nerve damage is revealed.

Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia

There are two main problems associated with patients being diagnosed as having SACD. Firstly, they symptoms are very similar to the symptoms of MS, unusual gait, numbness, balance difficulties etc. and so it’s reasonable to expect physicians to suspect MS when patients present with the symptoms. Secondly, and perhaps more importantly, there seems to be a problem with doctors associating any neurological damage with the patient’s inability to absorb B12 from food; and then there is the belief that is widely held that once replacement injections are started then the patient’s symptoms should disappear – including any neurological symptoms.

Neurological Alliance

We want to raise awareness among medical professionals of this serious aspect of Pernicious Anaemia and so we are pleased to announce that we are now members of the Neurological Alliance
– an alliance of over 80 professional and patient support groups that are concerned with diseases of the nervous system.

The Mission of the Neurological Alliance is to ‘To raise awareness and understanding of neurological conditions to ensure that every person diagnosed with a neurological condition has access to high quality, joined up services and information from their first symptoms, throughout their life’. And it is through the Alliance that we hope to make medical professionals more aware of this serious consequence of Pernicious Anaemia.
We have yet to attend any meetings or seminars but when we have we will update you on any progress being made.

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