BBC treatable disease mistaken for Alzheimer’s

I have this condition. It was an accidental finding about 7 years ago but the neurologist who diagnosed it was not a good one and seemed intent on getting rid of me off his books as soon as possible. He arranged for me to have two MRI scans of my brain, three months apart. Since he couldn't spot any differences between the two MRI scans he told me that my condition wasn't getting any worse, I required no treatment, and he discharged me. I really don't know how fast the deterioration usually is in NPH. In my case, after approx 5 years of getting worse and worse I couldn't really walk upright for more than a few feet without staggering badly and bumping into walls, furniture, corners etc and I was very close to buying a walker of some kind. I also had a very wide gait which made me look weird. My memory for vocabulary had deteriorated badly, and my general speech fluency had disappeared. I find it hard to have conversations now because I can't speak fluently. (Being deaf doesn't help.) I lose the thread of what I'm saying a lot too.

I asked my GP for a referral to see someone about my brain issues, and ended up being seen by the same man, much to my annoyance. This time though, he referred me to a neurosurgery department in a different hospital. Hallelujah! It took at least 18 months to go through the motions of having more tests to confirm the diagnosis, a lumbar puncture, various long conversations about what my options were. I finally had surgery (an ETV) earlier this year. It has made a big difference to my walking ability. I still stagger occasionally, particularly when I'm really tired, but I am generally much improved. My general confidence in being outside has improved as a result. Unfortunately it has had no real impact on my spoken vocabulary, general apathy, intellect, and, if anything, I would say my intellect has diminished since going through the surgery. I think I am disappearing, little by little, and within a few years I will be completely demented and unable to look after myself. I wonder how I would have been if I had been treated when the condition was first discovered.

One thing I haven't mentioned is that NPH is usually diagnosed in older people. However, whatever it is that causes it can occur at any age. I was told by both the neurologists I saw that the MRI evidence suggested that I had had the condition since birth or childhood, which explains why I could never stand on my head like other five-year-old kids (it hurt), and my balance was so bad that I couldn't walk a balance beam. I was so bad at it, in fact, that PE teachers thought I was mucking about for attention and so I was told off for my repeated failure. I've also discovered that my pituitary doesn't look normal either, but I haven't had any blood tests to check out my pituitary function.

 

Very sorry to hear your story, @Arnie Pye . Best wishes for the future.

 

Thanks for sharing your story @Arnie Pye

 

Arnie Pye, sadly you are a glaring example of the lie that a simple set of neurological tests shows up every brain disease so anything else is a "software" problem to be treated by CBT.

The bulldozer spread of Functional Neurological Disorders will only make this sort of tragedy more common. How dare they be so arrogant. It is awful.

 

I mentioned that my diagnosis was an accidental finding. I had severe chest pain and thought I might be having a heart attack. My husband took me to A&E. In discussing my symptoms something I said - I don't know what - made the doctor decide a CT scan of my head would be a good idea to rule out a stroke. Although CT scan isn't the ideal way of seeing hydrocephalus, the problem was clear enough that I got a surprise referral to neurology. (I wasn't having a heart attack and I hadn't had a stroke.) I wasn't told what I was being checked for until I got my first appointment with neurology.

I was eventually told that NPH can occur in all sorts of situations e.g. from birth or following a head injury or following a stroke. I'm sure there are other ways of developing the problem. In people like me who was born with it or developed it very young, the body and brain can adapt to the problem to some extent. But since adaptability diminishes as we get older that is when the symptoms of NPH start to become much more apparent. I did think that two MRI scans three months apart was probably not a terribly good way of determining whether or not I was deteriorating, given that it probably doesn't get worse that quickly.