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AMN EASIER

1,312 members • 1,165 posts

VLCFA posts

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MRI Result. All clear.

I was worried. Noticed a lot of mistakes as I type. All sorts of minor things. Surely I was developing ALD. But no. I am in the clear. See the pic? On the...

I was worried. Noticed a lot of mistakes as I type. All sorts of minor things....

•6 years ago

Lenti-D investigational gene therapy in boys under 18 years old results.

About the Starbeam (ALD-102) Study The Starbeam Study is assessing the efficacy and safety of an investigational gene therapy in boys up to 17 years of age...

About the Starbeam (ALD-102) Study The Starbeam Study is assessing the efficacy ...

•7 years ago

ABCD2/3 Upregulation.

Since I started on the Valproic Acid (with zero side effects, I'll add), it's sent me on a journey to do nothing short of cure myself. The industrial strength...

Since I started on the Valproic Acid (with zero side effects, I'll add), it's se...

•7 years ago

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Long AMN symptoms post. Plainly, I have a lot of time on my hands.

Hello folks, here is a sort of distorted timeline of me and AMN. All of the symptoms, most anyway. It starts when I was about 6 years old. Have a read, let...

Hello folks, here is a sort of distorted timeline of me and AMN. All of the sym...

•8 years ago

VLCFA and diet

Bad news..... Increased very long chain fatty acids in patients on a ketogenic diet: a cause of diagnostic confusion....

Bad news..... Increased very long chain fatty acids in patients on a ketogenic ...

•8 years ago

DHEA

Effect of dehydroepiandrosterone supplementation on fatty acid and hormone levels in patients with X-linked adrenoleucodystrophy....

Effect of dehydroepiandrosterone supplementation on fatty acid and hormone level...

•8 years ago

Upregulating ABCD2, ameliorating symptoms, keeping busy

Since coming off Gabapentin and exclusively taking 4-AP-3-MeOH, Modafinil and my cocktail of antioxidants, I feel good. Very good indeed. Vitamin B5 Vitamin...

Since coming off Gabapentin and exclusively taking 4-AP-3-MeOH, Modafinil and my...

•8 years ago

Fish oil (DHA) + Lorenzo's oil

This is very interesting, read this carefully, especially the conclusion. I've pasted it below... In conclusion: it was confirmed that supplementation with...

This is very interesting, read this carefully, especially the conclusion. I've ...

•8 years ago

Newly diagnosed AMN woman w/AMN son looking for diet/oil advice and experiences.

Hi. My name is Kristie and I am 45. At 12 years of age I tested negative for VLCFAs and was told I dos not have ALD and could not pass it on. My sister, who...

Hi. My name is Kristie and I am 45. At 12 years of age I tested negative for VLC...

•8 years ago

4 AP users

For those of you that are using 4 AP or 4 AP 3 ME, did you see results right away or did it take some time? If the latter, how long did it take to see any...

For those of you that are using 4 AP or 4 AP 3 ME, did you see results right awa...

•9 years ago

Lorenzo's Oil

Hello folks. Does anyone here actually take Lorenzo's Oil? My neurologist (who only prescribes an extremely limited set of drugs) says the Very Long Chain...

Hello folks. Does anyone here actually take Lorenzo's Oil? My neurologist (who...

•9 years ago

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At my wits end(sex and anorgasmia related post)

Hello, everyone, I want to consult, amn patients sexual dysf...

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