Potential misdiagnosis

Without wishing to create false optimism, I must explain to others my misdiagnosis of Parkinson’s over the last 2 1/2 years, in the hope it can help a few others.

About 4 years ago, I noticed my gait had changed slightly and I was tending to fall frequently. I guessed this was due to age (I am now 75) and declined to seek medical help. As my condition slightly deteriorated, at my wife’s insistence and friends’ waring of possible Parkinson’s, I visited my GP. She suspected Parkinson’s and referred to me to a ‘so called’ leading Neurologist (I was fortunate that this was financed by BUPA). He had arranged an MRI scan in March 2020 (to check for other abnormalities) and subsequently informed me the scan was normal for my age and that I probably had Parkinson’s, qualifying that it was always difficult to confirm absolutely. Due to the mildness of my symptoms at that stage, he advised against medication due its side effects.

My condition continued to worsen slowly, with having to use a stick for serious walking, difficulty with balance, inability to cycle or swim and worsening incontinence; I was suffering from increased falls, fortunately without serious injuries. I then revisited a different Neurologist in March 2021, who hadn’t succeeded in obtaining a copy of the March 2020 scan, and agreed a conservative treatment without medication, due to potential side effects.

By August 2022, my condition had considerably deteriorated, I could only walk short distances but with the use of a Zimmer frame (thanks to the Brit, William Robb who invented this marvellous frame 80 years ago), difficulty turning round, had to use a wheelchair for travelling, worsening incontinence, hardly sleeping, difficult concentration, but still with no body tremors. I welcomed my fortune to have had a healthy and enjoyable life, with hobbies such as gardening, cycling and walking for 70 years and managed to accept a declining condition for what was left of life.

I arranged to see this second Neurologist a month ago with a view to starting medication. By then he had obtained the March 2020 MRI scan, and as I entered his room, he smiled and said he didn’t believe I had Parkinson’s but Hydrocephalus, which although potentially serious was treatable. He showed me the scan with two large blobs across the brain, representing excess fluid (CSF). He expressed tactful “surprise” that this hadn’t been noted by the original Neurologist and Radiologist in March 2020.

Although no proof, I fear the original Neurologist never bothered to examine the scan, which a medical colleague informs me is unfortunately quite common.

I then visited a Neurosurgeon, who confirmed the likely diagnosis of Hydrocephalus and recommended an urgent lumbar drain to remove the excess CSF, albeit warning there was only a 70% chance of success with a small risk of serious side effects. He performed a relatively simple lumbar drain in late August which extracted 200 cc of this brain fluid (yes, half a pint!). I was amazed that within a few hours of recovering from the mild sedation, my walking had dramatically improved, my head felt much clearer (I still suffer from slight “brain fog”) and my friends tell me my conversation is much clearer. There are still some unpleasant side effects as the brain distorts from the removal of the excess fluid, such as temporary deafness, headache etc but these are gradually recovering.

My surgeon informed me that sadly there are still hundreds of folk with misdiagnosed Parkinson’s who could be treated by this procedure. It would not apply for any who suffer from excessive tremors,
I don’t wish to create false hopes, but I would be so pleased if at least a few can benefit from my fortunate experience. And please insist any Neurologist takes the trouble to review any scan themself.

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I was interested in your post because i have both Parkinson’s and Normal Pressure Hydrocephalus and have a shunt. Interesting trying to work out which symptom belongs to which condition - and yes i definitely have both everything was checked and double checked…
Good luck to you

Here’s a study which suggests that parkinsonism in Normal Pressure Hydrocephalus might not necessarily be degenerative and might be caused by a mechanical effect. The patient in this study showed an improved DaTscan after shunting.

I have a similar condition - low pressure syndrome caused by a CSF leak, and am hoping there might be possibility of improvement since this was treated.


“62% of patients with idiopathic normal pressure hydrocephalus featured a reduced striatal dopamine reuptake transporter binding, which correlated with the severity of parkinsonism”