My last blog article (An
Exciting New Diagnostic Tool) talked about a new PD-related R&D company
named CND Life Sciences that has created a skin biopsy test that detects the
presence of alpha-synuclein,
a mis-folded protein that has been a major target of PD research. The first article was written before I had
the Syn-One test, a minimally-painful series of three skin biopsies
(back of neck, thigh, and lower leg). My
reasons for taking the test are below.
Personally, I
want to know what I am dealing with so I can seek appropriate treatment and
make informed choices for my future. While this is not an
endorsement, it is a recommendation for Movement disorder doctors, Palliative
care teams, PwP’s, care partners and their families to research this new
development. For further information, visit CND LIfe Sciences - Home of the Syn-One Test™.
I received a
report a few days ago with the test results.
The bottom line was that I had “abnormal” results from two of the three
biopsies (neck and thigh).
Alpha-synuclein was detected in both locations. Also, nerve fiber density was abnormal in
both the thigh and lower leg biopsies.
Of course. “abnormal” is never good news, but it was a big step forward
in three regards:
- I It was consistent with the PD diagnosis I first received fifteen years ago. There was no testing available at that time to confirm my diagnosis. This is a big deal for those who are newly diagnosed!
- The results were not consistent with a lewy body dementia (LBD) diagnosis. Actually, it does not confirm dementia with lewy bodies diagnosis (DLB). LBD has two subcategories which are DLB and PDD which are basically the same except DLB occurs at or close to diagnosis and does not always include PD whereas PDD occurs later in the course of PD. (Confusing, I know!). It is helpful for me as it at least rules out DLB (I am told), though symptomatically it amounts to the same thing. I am told that research is being done to identify PDD.
- The abnormal nerve fiber density results confirm my somewhat tentative observation/diagnosis of neuropathy which is definitely helpful.
Once again, I encourage patients
who are dealing with confusion around any of the five neurodegenerative
diseases included in the Syn-ONE test (including PD and LBD) to tell your
doctors about CND Life Sciences. You may
have to push back some if they minimize the idea without looking into it We all do that occasionally.
