Subscribe to read:

I was misdiagnosed with Alzheimer’s disease

Upgrade your account to read:

I was misdiagnosed with Alzheimer’s disease

Digital or Premium Digital

You can also subscribe to the FT Digital or Premium Digital with Google

Health Care

I was misdiagnosed with Alzheimer’s disease

Tackling the similar but treatable ‘normal pressure hydrocephalus’ would advance public health

Norman Dombey at his home in Brighton © Charlie Bibby/FT

The first I knew that something was wrong was in March 2012, when my daughter noticed I was walking strangely.

Then I told my GP that when I was writing by hand the letters often came out back to front. In April, I found I couldn’t step off a kerb on a slope without holding on to a lamp post. I started to walk with a stick and, with the help of a consultant friend and my GP, was referred to the National Hospital for Neurology and Neurosurgery in Queen Square, London. By then I had a tremor in my right hand and couldn’t work out what time to put the dishwasher on at night for it to be ready in the morning.

In May 2013 I was admitted for various tests: CT scans, MRIs, cognitive and others. I was diagnosed with Alzheimer’s disease, put on the appropriate drug and referred to the dementia clinic.

Yet here I am more than five years later, not in a care home but writing this article, having given evidence at the public inquiry into the poisoning of the former KGB officer Alexander Litvinenko in 2015, appeared on Newsnight and in a Financial Times video on polonium, and given interviews to Dutch, French and German TV and to a Russian scientific magazine.

I can’t be the only person in Britain who has been misdiagnosed. The condition I suffered from has similar symptoms to what is described as Alzheimer’s disease, but is often treatable and reversible, as it was in my case.

The problem is that it appears to be largely under-diagnosed. Tackling the condition known as normal pressure hydrocephalus, or NPH, could be a major advance for public health. The operations to deal with it are relatively straightforward and the potential savings from what would otherwise be spent on care costs are considerable. There have been several reports of similar cases to mine in the US, where Alzheimer’s was misdiagnosed but eventually NPH was successfully treated.

Although there are no accurate statistics on the prevalence of NPH in adults, Oguz Cataltepe, a neurosurgeon at the University of Massachusetts Memorial Medical Center, estimates that it accounts for 5 to 10 per cent of all cases of dementia. According to the Alzheimer’s Society there are more than 530,000 people with a diagnosis of dementia in the UK.

I was diagnosed with Alzheimer’s following a review of my symptoms and test results that found I “had increasing problems with cognitive function . . . found it difficult to maintain . . . balance . . . failed at recognising fragmented letters” and could not draw a clock. It concluded that my “problems were consistent with Alzheimer’s disease”. Therefore, the diagnosis was Alzheimer’s disease. No ifs or buts.

The results also noted that I was “reluctant to accept the diagnosis”. As a physicist I knew that consistency was not causation. Although my symptoms may well have been consistent with Alzheimer’s, were there any other medical conditions that could have caused them?

I asked for a second opinion, supported by my medically qualified brother, and was taken to see Laurence Watkins, the neurosurgeon responsible for NPH patients in Queen Square. Unlike the neurology departments of most hospitals, there is a hydrocephalus clinic there. Including outpatients like me, it has about 300 patients.

Mr Watkins asked me to walk ahead of him along the corridor. He then told me that my gait was typically hydrocephalic. NPH is diagnosed when two of the three characteristic symptoms are present: cognitive impairment, broad-based gait and incontinence. I qualified.

Hydrocephalus means “water on the brain”. In fact, it’s not water but cerebrospinal fluid, the clear fluid found in the brain and spinal cord. It affects 0.2 per cent of newborn babies. NPH occurs in over-55s, but there are no accurate statistics on how prevalent it is.

© Charlie Bibby/FT

In October 2013 — by which time I had deteriorated so much that I had to order a wheelchair at Victoria station on my way to London — I went to Queen Square, where Mr Watkins performed a lumbar drain. He drained the fluid in my brain via my spine — some 750 millilitres, about a wine-bottle full.

I went home in November. By early December my wife reported to the hospital that I was walking normally without a stick, including up and down stairs, and my tremor had vanished. In January 2014, I completed a review of a book called Churchill’s Bomb for the journal Contemporary Physics.

But my treatment had not been completed. Cerebrospinal fluid is produced continuously in the brain. So another operation was needed to prevent a recurrence of the condition. In July 2014, I had a shunt inserted to siphon off fluid through a valve which kept it at constant pressure.

The staff at Queen Square see the potential upside of these relatively straightforward operations as far greater than the possible downside, although I was fortunate in that I responded particularly well to the treatment.

Five per cent of 530,000 is 26,500. If Dr Cataltepe is right, at least that number of people have NPH in the UK and can be treated as I was. It’s unlikely that more than a thousand are being treated at the moment. The others presumably have been told that their condition is irreversible.

The writer is emeritus professor of theoretical physics at the University of Sussex

Letter in response to this article:

Better diagnoses of neurological illness needed / From Dr Stuart R Gould, London N6, UK

Copyright The Financial Times Limited . All rights reserved. Please don't copy articles from FT.com and redistribute by email or post to the web.

Content not loading? Subscribers can also read I was misdiagnosed with Alzheimer’s disease on ft.com