Dystonia dopamine responsive or early on set pd

Living with Parkinson's Daily life
1

hi there folks. im currently under neurology at Brighton. i have had my datscan and result was abnormal. right caudate uptake weaker than the left.??
At the moment I have been told it might be dystonia dopamine responsive. have been taking sinemet for over 2 months now and I seem to be dealing with my symptoms much better. i am awaiting an appointment with the movement specialist.
just wondering if anyone else is in the same boat and still awaiting a proper diagnosis and in limbo.

2

Hi, @Shaker_34. It sounds like you’ve been through quite a bit already, and it’s completely understandable to feel in limbo while waiting for a clearer diagnosis. Many people here will relate to that feeling.

It’s encouraging to hear that Sinemet is helping with your symptoms in the meantime. You might find it helpful to read more about dystonia on our website.

And if you ever want to talk things through, our helpline is here on 0808 800 0303. Our trained experts and specialist nurses can help you understand your results a bit more and discuss what to expect from your next appointment.

You’re definitely not alone in this. It’s great you’ve reached out here, and I’m sure others will share their experiences soon :blue_heart:

Parkinson’s UK Moderation Team

3

Hello Shaker …

AI Overview

An abnormal DaTscan result showing weaker right caudate uptake than the left

indicates a loss of dopamine nerve endings in the right striatum, particularly the caudate nucleus. This finding is typically associated with conditions involving nigrostriatal degeneration, such as Parkinson’s disease (PD), multiple system atrophy (MSA), or progressive supranuclear palsy (PSP).

However, the medical information indicates that a dopa-responsive dystonia (DRD) diagnosis usually is associated with a normal DaTscan. In DRD, the problem is related to dopamine production, but the dopamine nerve terminals themselves (which the DaTscan measures) are generally intact. The fact that your scan is abnormal means your clinical picture might be more complex or the initial suspicion of DRD might need re-evaluation alongside other clinical information.

Interpretation of Your DaTscan Result

  • Abnormal DaTscan: This result supports the presence of nigrostriatal dopaminergic dysfunction/loss, which is a key feature of conditions like Parkinson’s disease and atypical parkinsonian syndromes.
  • Weaker Right Caudate Uptake (asymmetry): The scan shows asymmetric dopamine loss. The brain’s circuitry means that the dopaminergic loss in one hemisphere (your right) often corresponds to more significant physical symptoms on the opposite side of the body (your left).
  • Caudate vs. Putamen: In typical Parkinson’s disease, the putamen (the tail of the “comma” shape on the scan) is usually affected earlier and more severely than the caudate nucleus (the head of the “comma”). Significant caudate involvement, especially early on, can sometimes be associated with a higher risk of cognitive issues or gait problems in PD.

Dopa-Responsive Dystonia (DRD) and the DaTscan

  • DRD typically has a normal DaTscan. The core issue in DRD is usually a genetic defect affecting an enzyme involved in dopamine synthesis (e.g., GCH1 gene), not the structural loss of the nerve endings. Treatment with levodopa dramatically improves symptoms because the nerve terminals can still take up and use the replacement dopamine effectively.
  • The Discrepancy: Your abnormal DaTscan result is generally not what would be expected for classic DRD. This suggests your doctor is considering different possibilities, or perhaps your case has unusual features that require further investigation.

Next Steps

The results of any medical test, including a DaTscan, must be interpreted within the entire clinical context, considering your specific symptoms, their progression, and your neurological examination.

It is crucial to discuss these results in detail with your neurologist, especially a movement disorder specialist. They can integrate the scan results with your clinical presentation (e.g., if you have diurnal fluctuations where symptoms are better in the morning and worse at night, which is typical of DRD) to reach an accurate diagnosis and appropriate treatment plan. Your doctor may recommend a trial of levodopa medication, which is also a diagnostic test for DRD due to the dramatic response seen in affected individuals.

4

I am also on Sinemet which is brilliant.

Steve2

5

wow. thanks steve for the information there.
ok thats now more understandable. as i am waiting to see the movement specialist to determine exactly what I have.

6

i have problems on my right side. right foot right hand tremor which is strange cause its normally the opposite side to the caudate thats weaker.

7

I am no genius … I just copy & pasted your diagnosis into the google search engine and out came all that information.

Your symptoms do sound complicated that is why it is difficult to get a proper diagnosis.

I must warn you though, all you get is expert guesswork and nothing much is done bar prescribing Parkinson’s medication to make your symptoms better. The fact that Sinemet improves things for you is the best guide that you do have this wonderful condition called Parkinson’s.

A datscan does not prove much, I have had 3 different diagnosis on mine from experts. 1 x NHS and 2 private.

I have been told that my symptoms, ie poor balance without Sinemet are Parkinson’s but the fairly severe gait freezing I get is not Parkinson’s. I have more or less been told that I will just have to live with it. No further tests can be done.

I have had a number of Neurological physiotherapy sessions that have aided me a bit. Also exercise classes given by a trained Parkinson physiotherapist. All worth doing but you can look on Youtube for Parkinson’s exercises.

After 2 years since diagnosis I am content with my lot. It was frightening in the early days.

Steve2

8

AI Overview

There are

over 40 symptoms associated with Parkinson’s disease, but the four main motor symptoms are tremor, muscle stiffness, slowness of movement, and impaired balance. However, many other physical and non-motor symptoms can occur, and the experience of each person is unique.

Main motor symptoms

  • Tremor: Shaking that typically begins in a limb, often the hand or arm, and is more likely to occur when at rest.
  • Muscle stiffness (Rigidity): Muscles remain contracted for long periods, which can cause pain.
  • Slowness of movement (Bradykinesia): Physical movements become slower, making everyday tasks difficult and potentially resulting in a slow, shuffling walk.
  • Impaired balance and coordination (Postural instability): Difficulty with balance can lead to falls.

Other common symptoms

1 Like
9

yeah i know.my grandfather was diagnosed with p.d when he was 48. he lived till 81. im not worried about further down the line just here and now early stages. I just need that diagnosis.

10

I understand, just be aware that you may not get answers.

Steve2