VLCFAs

[Blacksheep]

I'm curious how many people here keep check on their VLCFAs and whether you all have discovered any correlation between VLCFAs and severity of disease.

[monkeybus]

ncbi.nlm.nih.gov/pmc/articl...

Final line or so...

Moreover, our results suggest a direct link between VLCFA levels and MRI severity scores.

[Blacksheep in reply to monkeybus]

Monkeybus, you rock. This is exactly what I was looking for.

[monkeybus in reply to Blacksheep]

Thanks a lot, Blacksheep. Pretty much all I do is read up about our disease.

Used to be spasticity I read about. Now it's VLCFA. I'm reading up a lot about neuropathy as well.

I'll talk to you later about all this

[SongStream]

Like Blacksheep, I have wondered if changes in our VLCFA might commensurate with our symptoms. Two questions from reading the linked study: Should we also include an annual VLCFA test along with a MRI as recommended? And, do any of us have access to these advanced MRI's? I asked my neuro about DTI and he said it was still in testing at the medical group.

[wilburlois15]

One thing to watch out for here is that the level of blood VLCFA in ALD/AMN patients is an order of magnitude different to that in "normal" people (those who do not have the ABCD1 mutation). Even those of us with the mutation, and without any symptoms (such as me 15 years ago) still have VLCFA levels similar to those of an ALD patient and a long way from the norm. The symptoms we have are a function not of our body's ability to process the VLCFA (that is impaired in all of us who have the ABCD1 mutation) but in our body's ability to cope with the toxic levels of VLCFA.

[Intensor in reply to wilburlois15]

Do you have any suggestions on how to remove this intoxication?

[wilburlois15 in reply to Intensor]

I don't, but I also don't think it matters. The high level of blood VLCFA reflects the high levels in each cell in the body. It's not the blood that's the problem, the problem is within individual cells because that is where the excess VLCFA would normally be processed and removed.

[Blacksheep]

I am a 45 year old woman. My VLCFAs are very mildly elevated. I have no symptoms. At 45 my mother used a walker. Her VLCFAs were much higher than mine. I assume mine have always been low because at 16 years of age when I was originally tested the conclusion was negative. My son's VLCFAs are much higher than mine. He is 23 and non symptomatic aside from adrenal