A quick update, I got my NFL test results back, it's 4.6 pg/ml, which is well within the normal range (given as 9.9 by Synlab). I assume this is using the SIMOA method, but it's not explicitly stated anywhere. The first round of genetic tests have also come in, so far it's been verified that I don't have C9.
The question I have though is that I've been taking folate (as per the recommendations of my neurologist) and I know that biotin can result in a false negative, but do you guys think that folate can also influence the test? I've never found any warning or caution about this so I doubt it, but I'm just trying to make sure.
[And yes, I know what I'm about to describe actively points away from ALS]
OTOH, my actual physical symptoms are getting worse. The fatiguability, the difficult to describe weird feeling and the slowed movements after repetitive motions are now also present in my left hand, alongside some mild-moderate pain that spreads all the way through my forearm when using my pinky, which is very similar in my right hand as well, it just doesn't hurt as much at the moment. This has been getting especially worse in the last 3 days, at this point it's painful to write on the keyboard, so now it's interfering with my ability to do my job.
I also have a burning pain sensation on both of my arms, numbness in my legs and that feeling of vibration that I've mentioned. I'm going to the GI doctor on Thursday, the main thing that I'm suspecting is that the first course of injections did not fully treat the B12 deficiency.
The question I have though is that I've been taking folate (as per the recommendations of my neurologist) and I know that biotin can result in a false negative, but do you guys think that folate can also influence the test? I've never found any warning or caution about this so I doubt it, but I'm just trying to make sure.
[And yes, I know what I'm about to describe actively points away from ALS]
OTOH, my actual physical symptoms are getting worse. The fatiguability, the difficult to describe weird feeling and the slowed movements after repetitive motions are now also present in my left hand, alongside some mild-moderate pain that spreads all the way through my forearm when using my pinky, which is very similar in my right hand as well, it just doesn't hurt as much at the moment. This has been getting especially worse in the last 3 days, at this point it's painful to write on the keyboard, so now it's interfering with my ability to do my job.
I also have a burning pain sensation on both of my arms, numbness in my legs and that feeling of vibration that I've mentioned. I'm going to the GI doctor on Thursday, the main thing that I'm suspecting is that the first course of injections did not fully treat the B12 deficiency.
