Anti–Alpha-Synuclein Immunotherapy Patient Views

Great to hear. Kind of related? I was just reading about genipin a supplement possibly that helps clear a-synuclein.

That’s an interesting and unique story. My case is similarly odd - I landed at the neurologist with autonomic issues, dysphagia, dyspnea, fasciculations, and balance issues. I had a datscan ordered basically as a method of exclusion, doctor and I were equally surprised at the results. That’s what spurred the biopsy which also came back positive for alphasynuclein.

My symptoms are much more in line with MSA, yet I don’t fit the clinical picture for MSA because I’ve been ill for 4 years and should be in much worse shape after so much time if that was the case. I don’t have a tremor, bradykinesia, or stiffness. Nobody can tell I’m ill and I’m still at work doing a very physical job. Even with positive results on both tests, my clinical picture is too obscure to say anything.

DatScan can’t diagnose Parkinson’s, it just images neurodegeneration in the basal ganglia and striatum negra. A positive DatScan can also indicate MSA, PSP, CBD, DLB.

Similarly, the skin biopsy can’t diagnose Parkinson’s, it can only detect alphasynuclein.

Both of these tests are indicative of Parkinsonisms, but there’s more diseases besides PD that will show results on these tests.

The biopsy is still very new like you said, relatively speaking. There’s reports that it potentially has specificity (being able to distinguish which disease by the “signature” of how the alphasynuclein is distributed throughout the biopsy sites), but at the moment there aren’t enough numbers to back it up on a clinical level.

A newly identified small molecule compound, called SynuClean-D, can prevent the formation of toxic alpha-synuclein aggregates, an animal study shows. What are your thoughts on this news?

Does anyone know the connection between clumping of misfolded alpha-synnuclien (Lewy bodies) and mitochondria? I see articles about one or the other, but nothing connecting the two.