Negative Datscan

Has any person in the forum previously had a Datscan that was negative, only to find out later that they had Parkinson’s? Thank you for your comments. Flossy

This didn’t happen to me (my datscan was positive) but when I was referred for the scan my consultant did say that it can give false negatives but never false positives.

I had a negative Datscan but still have PD

Hi Flossy,
I too had a negative Datscan in December 2021, in New Hampshire, when I was part of the PPMI study
I was originally diagnosed in September 2020.
In that particular study they seem to put all their faith in the Datscan, and ignore all other symptoms, and in my case all other positive symptoms that I had PD.
There is still a lot to learn how PD affects different people and the symptoms, although it does look as though there are breakthroughs thanks to the MJFF foundation.

I had a positive DaTscan, and yet my symptoms improved after treatment for a spinal CSF leak.

My scan was positive and beforehand I was told it was a confirmation of diagnosis likelihood rather than a definitive yes or no

Hi, just stumbled upon this thread. I’ve been investigated for over two years now, myoclonus, Parkinsonism, tremor, ataxia, dystonia and some autonomic issues, now seeing MDS regularly, no diagnosis yet. My DatScan was positive albeit mildly. Recently I have had symptoms of Spontaneous intracranial hypotension and am wondering if this should be looked into further? Will mention it to my MDS obviously. Did you recover completely after treatment, i.e. you don’t have Parkinson’s or related syndromes? Thanks so much,

I would certainly mention this to your MDS. You could have a CSF leak

After my first epidural blood patch my Postural Instability completely resolved within 24 hours. My hand stiffness was gone within a week, but I still had a tremor. A year later my symptoms returned and I was admitted to hospital for a couple of weeks. I had a CT myelogram which proved that I have low pressure. I’m currently waiting for the radiologist to review the images and hopefully find the leak. Then my case will be discussed at a MDT meeting. This is a newly identified condition, which might be behind many cases of Parkinson’s, and I don’t want to rush into irreversible ‘solutions’ which might limit future options.

There are not many neurologists in the world who are knowledgeable about CSF leaks. Here’s a list - Find a Doctor | CSF Leak Association