lab results NFL, Cystatin

[House2]

Discussion to follow.

UPDATE: I found a lab that does the S100-b protein blood test (need to figure out the logistics)

2001766 / S-100B Protein, Serum

Out of pocket price is $41.62 subject to change.

aruplab.com

[House2]

Refer to original post...

healthunlocked.com/cure-par....

[House2]

Some possible conclusions:

 

1.     Research that suggests NFL/Cystatin are valuable biomarkers for PD is flawed.

 

2.     The Nicotinamide Riboside, NeuroMag and Probiotics I’ve been taking have slowed down my neurodegeneration.

 

3.     Something else

[enjoy2013 in reply to House2]

Research on these molecules is certainly not thar straightforward nor its interpretation . This is why your physician was hesitant, and why my thoughts would be (1) determine what you want to know from this marker (2) to deternine how variable is the measure of the marker in your case by measure the levels in 2 tests at a distance of xdays (3) do at least 3 measures at 3 to 6 months distance to see how it's evolving in response to something and how it correlates with your clinical situation.

The way I would use it, I want a biomarker to see if a new treatment ( be it mannitol or B1 or any other) is actually helping, hence I want to see levels going down in the next test.

In a quick check I think that cystatin is measured in CSF ...

[House2 in reply to enjoy2013]

I agree these labs need to be repeated over time. This 1st test merely establishes a baseline, the trend from baseline "may" provide valuable information. I'm 8 years post-PD diagnosis, so I am surprised my results are within the normal reference range.

Cystatin is tested from blood, not CSF.

Dong, X., Zheng, D., & Nao, J. (2019). Measurement of serum cystatin C: A valuable tool for evaluating dyskinesia in Parkinson’s disease. Neuroscience Letters, 705, 172–176

Based on my lab results, it is tempting to infer that my nervous system is currently degenerating at a pace similar to the population in general (within the normal lab reference ranges). Not at the accelerated rate reported in other patients diagnosed with PD (as suggested / determined by Cystatin and NFL blood biomarkers).

[enjoy2013]

Indeed. Possibly. The question is whether this is what you feel?

[House2 in reply to enjoy2013]

How I feel is a tricky question, 2022 was a terrible year. I was feeling well enough to return to work, got Covid, then a pulmonary embolism. Off work for several months. Rehabbed back to work. Then tripped on a dog toy, fell down a flight of stairs, currently rehabbing broken ribs x4 and a fractured collar bone. So how I feel is "to be determined" I can say, in spite of it all, my brain fog and orthostatic hypotension subjectively are much better.