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DaTscan impression "Serious Parkinsonism" ??

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I'm 61 and suspected I have Parkinson's (family history) so I went to a Neurologist. He put me on low dosage of Sinement & Miraplex to see what would happen. The Dr, didn't think I had the right symptoms and suspected Restless Leg Syndrome. The meds helped some of my symptoms. Since the meds helped, he scheduled a DaTscan.

The DaTscan came back with "Serious  Severe Parkinsonism"

I & my Dr. were surprised. I was hoping I had been wrong and it was something like RLS

 

What is meant by "Serious Severe Parkinsonism" ? Based on my symptoms, I feel I am in the very early stages.

 

======================================

 

The SPECT demontrates:

Mildly diminished uptake in the right caudate head.

Normal uptake in the left caudate head.

Moderately diminished uptake in the right putamen.

Severly diminished uptake in the left putamen.

 
Since my Neurologist can't or won't tell me what the results mean, I am working on getting into nearby Parkinson's & movement disorders center.
Edited by wilsons66604

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"Serious parkinsonism"? ? Are you absolutely sure that this how the final conclusion is written in the Datscan report?

 

Severity of imaging abnormalities (in the Datscan) are not strongly indicative of disease stage or disease severity.

 

So, if your symptoms are still mild,  and well controlled by low dosage of dopaminergic drugs, you most likely are in the early PD stages, regardless of the Datscan results.

 

A second opinion by a Movement disorder specialist ( a neurologist specialized in Parkinson's and related movement disorders) might help clarify the diagnosis (most likely Parkinson's disease or some form of genetic parkinsonism-since you mentioned a positive family history..).

 

Keep us posted!! And welcome to our forum!! :)

Edited by christie

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Thanks for the welcome!

I'm sure that is what the report says.  It is confusing and is the reason why I am looking for a specialist.

I am wondering if the "Serious" part is related to the amount of loss shown in my scan and not referring to the symptoms I am having.

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From a clinical point of view, the degree of neuronal loss -as shown in the Datscan- is not that significant, as long as your symptoms are mild and well controlled with meds...

 

There are patients with severe symptoms who have only mild Datscan abnormalities, and vice versa.

 

The Datcan is used simply for confirmation of diagnosis. Not for prediction of disease severity or rate of progression.

 

Your Datscan results are compatible with the clinical diagnosis of Parkinson's disease. you mentioned the presence of a positive family history for PD-this may suggest-possibly, but not necessarily- that genetic parkinsonism may also be included in the differential diagnosis -this is not important from a clinical/therapeutic aspect, because the treatment and prognosis are largely the same in both forms of parkinsonism.

 

Good luck and keep us posted on your appointment with the specialist.

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Thanks. I will stick around and post when I have any significant updates.

All that said...Parkinsonism is the big take away from this.

At least I know what I'm working with now.

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======================================

 

The SPECT demontrates:

Mildly diminished uptake in the right caudate head.

Normal uptake in the left caudate head.

Moderately diminished uptake in the right putamen.

Severly diminished uptake in the left putamen.

 
 

 

If this is what was written on your report from the DatScan the Severly diminished uptake in the left putamen only mean that the dopamine up take cells are not working very well in that part compared to a normal scan. This does not mean you have a more sever or serious case of Parkinsonism just that specific area has greater loss.

 

If the conclusion on the report state "Serious parkinsonism" that seems odd. I would seek and MDS as Christie has suggested.

 

I know when I got my DatScan the doctors and the technician said that the scan can only show what is going on with my Dopamine cells. They made it clear that it can not solely diagnosis that I have Parkinson's.

 

I hope this helps and Keep us posted

 

By the way. Welcome and feel free to ask questions. We have a great bunch here.

 

Blessings

Adam

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Im not a doctor but I am  wary of tests especially in parkinson.I have found a excellent site patients like me where you can rate your progression and keep track of your PD.Many doctors have told me my progression is mild.I often say if this is mild what is advanced lol

 

But my rating confirms I am mild "On meds" and slightly above " off.".Azilect has helped some with some elevated BP unsure of connection.

 

Like nervous aliments it is best to avoid terms like severe or any term that implies danger..It can cause a lot of unnecessary concern

 

Always keep in mind for the majority of PWP the disease is slow and non dramatic.lol

 

best

john

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The GE site on the DaTscan is excellent, and look at the patient side and the doctor side.  I personally find the doctor side more useful. 

 

My scan results were this, and really just depends on the radiologist reading the scan.

 

Decreased DAT tracer uptake involving the

lentiform nuclei, more pronounced on the right. Findings would support

a clinical diagnosis of parkinsonism.

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Update:
I just realized I said "Serious Parkinsonism" I was wrong. The report said "SEVERE Parkinsonism"

 

I've been taking sinemet & mirapex 3x/day and have mixed feeling about it. It's almost seems like I was doing better before I started on any meds.

Either my symptoms are quickly getting worse, the meds are making me more aware of my symptoms, or the meds have side effects that don't agree with me.  It's as though I have withdrawals that cause tremors or stiffness when dose is wearing down. Is this normal? 

 

When I'm on, I have noticed that many of my body aches & pains are gone & my hands don't cramp. I guess the symptoms I have been blaming on old age were actually the PD.

 

I have been able to get an appointment with the movement disorder team @ KU Med! I'm really looking forward to that. Too bad it isn't until August.  

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I've been taking sinemet & mirapex 3x/day and have mixed feeling about it. It's almost seems like I was doing better before I started on any meds.

Either my symptoms are quickly getting worse, the meds are making me more aware of my symptoms, or the meds have side effects that don't agree with me.  It's as though I have withdrawals that cause tremors or stiffness when dose is wearing down. Is this normal? 

 

 

When I first started on Sinemet I'd feel awesome when my meds were on- and miserable when they wore off, since then the extremes have ended in both directions.

 

This is how I have come to think of it- when I first started the meds my brain had been on forced march, for months, trying to keep me running on what little dopamine it could produce. So when I started the meds it finally got a chance to rest, and if you've ever done any endurance athletic event you know that it's easier to just keep pushing through than to come to a full stop and then start moving again.

Eventually, as per my analogy, my brain got enough of a rest that it can now take those sprints in between med doses with much less effort and pain, but it took time to get there.

But that's just what's been true for me personally and how I think of it.

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From a clinical point of view, the degree of neuronal loss -as shown in the Datscan- is not that significant, as long as your symptoms are mild and well controlled with meds...

 

There are patients with severe symptoms who have only mild Datscan abnormalities, and vice versa.

 

The Datcan is used simply for confirmation of diagnosis. Not for prediction of disease severity or rate of progression.

 

Your Datscan results are compatible with the clinical diagnosis of Parkinson's disease. you mentioned the presence of a positive family history for PD-this may suggest-possibly, but not necessarily- that genetic parkinsonism may also be included in the differential diagnosis -this is not important from a clinical/therapeutic aspect, because the treatment and prognosis are largely the same in both forms of parkinsonism.

 

Good luck and keep us posted on your appointment with the specialist.

Christie

 

Thanks for your input...you are so valuable to our forum.

 

DaT scans: you say "mild DaT scans"...and then there are negative DaT scans with PD...I have significant PD symptoms...classic...and five negative DaT scans...DH has negative DaT scans...and PD. PD is the gift that just keeps giving.....

 

NN

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