Only mildly elevated VLCFA ratio

[rfishburn]

I'll make this quick, I'm hypo pituitary with addisons. My sleep doctor is a neurologist and to get a refill on my provigil I had to come in for an exam and my eyes weren't tracking right so I was sent for an MRI. They found lesions on my brain and assumed MS but none of the other signs were there so my Endocrinologist ran a VLCFA's test and it came back only mildly elevated 0.17 H Reference Range: 0.01-0.16 , I should probably move on and not worry about the abcd1 test right? Thanks

[COwithAMN Administrator AMN EASIER Volunteer]

The VLCFA test is definitive as far as I know. It's years since my test was done and I wasn't given any value or normal range.

The symptoms you describe on your profile page seem very like AMN. What does your doctor say - has she given any view as to what you have? Someone should be able to give a view.

Where do you live?

Best wishes

Chris

[Tim76]

I was diagnosed 24 years ago with only a VLCFA test. I do have the results but am not sure how to read how elevated they are. I recently had the abcd1 lab done in order to participate in the min-102 trial.

I agree with Chris - I believe the VLCFA is definitive but stay persistent to get answers/proper diagnosis.

Let us know if there’s any other questions we can try to answer and best wishes.

Tim

[rfishburn in reply to Tim76]

Thanks for the reply, I believe my insurance covers a genetic counselor who can run the test.