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I See My PD Doctor On Tuesday. What Would Be The Most Important Question To Ask Her?

A MyParkinsonsTeam Member asked a question 💭
August 18, 2024
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A MyParkinsonsTeam Member

"When are you idiots going to figure out a cure for this stupid, embarrassing, humiliating, rotten, evil, wicked, mean and nasty 'disease'?"

August 18, 2024 (edited)
A MyParkinsonsTeam Member

Testing seems to be a big issue in PD world; the traditional diagnostic approach of a thorough medical history, neurological exam, and clinical studies may be followed by a trial of a Sinemet medication to see whether or not any changes occur. To me, it's a backwards approach to diagnosis. However, some neurologists now are including Single photon emission CT (SPECT) scans and Dopamine transporter scans (DAT) in suspected cases for confirmation.

Are you aware of the skin punch biopsy test? You might want to look up: https://hms.harvard.edu/news/simple-skin-test-m...
https://www.nih.gov/news-events/nih-research-ma...

Good luck!

Skin test detects evidence of Parkinson’s and related disorders
Skin test detects evidence of Parkinson’s and related disorders
August 19, 2024
A MyParkinsonsTeam Member

How do I get the syn-one test?
To perform the Syn-One Test, your doctor would need to collect three small skin punch biopsies from you in their office. Your doctor can order a biopsy kit directly from CND.
https://cndlifesciences.com/patients/#:~:text=T....
"The Syn-One Test is a skin biopsy that can help neurologists diagnose Parkinson's disease and related disorders by detecting the presence of alpha-synuclein, a protein associated with the disease. The test was developed by CND Life Sciences and has been available since 2019.
The test involves taking a small biopsy from three specific sites on the body: the base of the neck, just above the knee, and just above the ankle. The biopsy is performed under local anesthesia, and the biopsy areas heal on their own without stitches and in most cases without scarring. The biopsy specimens are then sent to CND Life Sciences in Arizona for analysis, and a report is provided after three weeks. The report indicates if any phosphorylated alpha-synuclein was found, as well as other information about peripheral nerve health.
According to Synapticure, the Syn-One Test has an accuracy rate of over 95%. However, the Parkinson's Foundation notes that the Syn-One Test alone does not diagnose Parkinson's, which is typically diagnosed using a combination of a neurological examination, response to dopamine therapies, and multiple follow-up visits.
The average cost of the Syn-One Test for a patient paying themselves is less than $1,500, and CND Life Sciences has flexible payment plans. Medicare typically covers 80% of the total fee, and insurance may cover all or some of the test fee. "

Information about the Syn-One Test for Patients and Caregivers
Information about the Syn-One Test for Patients and Caregivers
August 21, 2024
A MyParkinsonsTeam Member

Is there anything you want to know about your progression about the illness?

August 21, 2024
A MyParkinsonsTeam Member

Thanks so much for information! Have added both to my question list. Hugs!

August 19, 2024

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