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Can VLCFA be elevated, but it's not ALD or AMN? What otehr diseases can be?
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AA
- By AA
- Posted October 4, 2009 at 11:13 pm · 3 replies
- In Treatment and therapy
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- By momandnurse
- Posted October 12, 2009 at 9:41 pm
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I have been asking this question for quite some time. I have a 3 1/2 yr old boy that has had 2 out of 3 labs with elevated verylong chain fatty acids. He has also had a MRI that showed some signal prolongation in the white matter. We are now waiting for a genetic test to be done to determine if this is ALD. I feel fortunate to be in a state where there is leading research being done. There are certain foods in the diet that can cause elevated VLCFA so a fasting lab should be done also a MRI or genetic test could be done. Is there someone in your life with elevated VLCFA?
- By AA
- Posted October 12, 2009 at 11:10 pm
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No, nobody had VLCFAs elevated in our family. My son had his lab not on fasting stomach. Do you think it can be false result and we need to repeat the test?
- By momandnurse
- Posted October 12, 2009 at 11:36 pm
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The only reason we had the tests repeated was because we had elevated VLCFA then a "near normal" (with the exception of C26, C26:C22) and an abnormal MRI. We were trying to find the root cause of our little boys insomnia, behavioral issues, sensorineural hearing loss and insensitivity to pain. We have now seen yet another Dr. That is suspicious of ALD so we are finally just having the genetic test done at KKI. If it were not for all of these other issues I would not have even thought about testing for ALD. Unless there are other issues going on from the research I have come across it would appear that you are probably in the clear, however, only an expert can really confirm or help guide your decisions. Don't you wish things were just cut and dry?
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