Lab testing before onset?

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Joined
Aug 10, 2012
Messages
204
Reason
PALS
Diagnosis
12/2012
Country
FI
State
Southern Finland
City
Espoo
I'm wondering if anyone with positive FALS screening result but no symptoms has been offered an extensive lab test program to provide reference data for the situation after eventual onset? That would serve both a scientific purpose as well as enable to recognize things that change at onset. Correcting those things that do change might well help slow down the disease.

For example, nobody seems to know if very low serum ceruloplasmin is a causative factor or consequence of ALS. Having that determined prior to eventual disease onset in FALS would seem an easy way to find out.
 
I am so-called preFALS. I was tested by my pcp and did not follow up in any way through her. However I am in several studies including the preFALS in Miami. They take many tubes of blood every visit. Some are tested right away and others are stored for future use. They also take csf and skin. They do not give results and I do not know exactly what they look at. They also do EMGs, NCS, MRIs, neuropsych testing, muscle impedance and some very specific strength measurements. I am in another study that does most of the above plus TMS testing.
 
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