Looking for feedback on Syn-One Biopsy

Posted by amkie @amkie, Aug 22, 2024

Anyone with information or experience with having a Syn-One biopsy. Did results help with your diagnosis? Did the results seem legitimate? What dud it indjcate for ypu as a diagnosis, if ypu don't mind sharing your results.
Lab won't submit to insurance (mine is medicare advantage plan)and charges patient directly. Anyone else experience this?

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cctee | @cctee | May 30, 2025

I had this test 2 weeks ago, Have not gotten results back yet or the billing for it. How did yours turn out? The skin test and healing went very well. Very apprehensive about getting results. Hope yours were negative.

amkie | @amkie | May 31, 2025

Mine were negative. Good luck to you.

johnoclark | @johnoclark | May 31, 2025

Here's what my doctor's nurse practitioner said recently;
"The skin biopsy does show the site at the neck did show phosphorylated alpha synuclein. No amyloid deposits in the skin. There is a small fiber neuropathy in the leg. Based on your physical examination, we are suspicious that you may have Parkinson's disease - which may be impacting your walking. Have you attended PT for falls/ balance before? "

cctee | @cctee | Jun 14, 2025

In reply to @amkie "Mine were negative. Good luck to you." + (show)

Mine were negative too, but I still have a boat load of symptoms. Now what? Do you have a lot of symptoms that are not explained.

pderzy | @pderzy | Dec 22, 2025

In reply to @cctee "Mine were negative too, but I still have a boat load of symptoms. Now what? Do..." + (show)

@cctee My results were also negative. I'm in my early 40's, with family history and also a number of symptoms getting worse. This test is not FDA approved. It's a lab developed test. They published their key trial in JAMA, where in PD and MSA they tested in an older population. For PD, no one under the age of 63 was tested and in MSA, no one under the age of 67 was tested. The average age of PD diagnosis is 60, but this study tested in people with an average age of 70. All of this is to say that they tested in a more advanced disease population for the most part.

The company received breakthrough designation for age 40 and up, yet the current trial that they are running recruits age 50 and up.

I know someone with YOPD who got this test done and it was negative and then they got the CSF test done (which was supported by MJFF) and it was positive.

I look forward to seeing the results in a younger population. If the test is going to be made available to younger patients in early disease progression, there should be data to back up the accuracy of the test in that population. That's why insurance is not paying for this test for the most part.

Finally, conducted a retrospective study attempting to show it's clinical utility. In this study as well, the company ran the analysis on older patients (71 years old).