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wearwear

Negative DaTscan

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Hi Dr. Okun

 

I was diagnosed with mild PD in October of 2015 by a regular neurologist. Upon hearing the news I stated that I’d like to participate in clinical studies. My neurologist forwarded the dx to the Institute for Neurodegenerative Disorders (IND) at Yale New Haven. I also signed up for the PPMI study through the Fox trial finder.

 

Several weeks later I was evaluated by a MDS at the IND who confirmed the dx. In January the I received the DNA results from the PPMI study, which showed that I have the GBA mutation.

 

The IND scheduled me for a full 2 days testing and once again it was confirmed by a MDS that I have mild PD. They also did a DaTscan, several weeks later I was told the DaTscan was negative. I haven’t had a chance to discuss in detail with the MDS and my next appointment is in August.

 

My question is, dose the negative DaTscan mean I don’t have PD?

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Thank you for the question.  The GBA mutation puts you at risk for Parkinson and Parkinson like symptoms.  I think it comes down to your symptoms more than the DAT scan at this point as in many cases with DAT scan who have been followed long-term; the DAT scan can convert to positive.

 

I would therefore key in on symptoms and the GBA mutation and make a decision whether to treat with your neurologist who should follow you carefully over time.

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Thank you Dr. Okun, you provide a valuable service for those of us searching for answers. Your time and dedication are truly appreciated.

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