Adrenomyeloneuropathy (AMN) is a rare inherited metabolic disorder that is a form of Adrenoleukodystrophy, which most often occurs in young men. Women are often referred to merely as “carriers”, but some have severe effects, including loss of mobility, incontinence, loss of balance, etc.
Adrenomyeloneuropathy is characterized by the loss of the fatty covering (myelin sheath) on nerve fibers within the brain (cerebral demyelination) and the progressive degeneration of the adrenal gland (adrenal atrophy). Neurological disability in Adrenomyeloneuropathy is slowly progressive over several decades. Adrenomyeloneuropathy interests the wider neurologic community because of its similarities to Multiple Sclerosis (MS).
5.0 ( Per 100,000 Population ) [Source]
Adrenomyeloneuropathy is an inherited metabolic disorder.
There are a number of symptoms that affect people with Adrenomyeloneuropathy. The average age at which symptoms first appear is 28, but onset can occur anywhere from the second to the fifth decades of life.
|Weakness and Stiffness||Gradual, progressive weakness and stiffness of the legs|
|Weight Loss||Weight Loss|
|Excessive Muscle Tone||Excessive Muscle Tone|
|Difficulty Walking||Difficulty Walking|
|Visual Defects||Visual Defects|
|Difficulty in Articulating Words||Difficulty in Articulating Words|
|Behavioral Changes||Behavioral Changes|
|Adrenal Insufficiency||Adrenal Insufficiency|
|Bladder Dysfunction||Bladder Dysfunction|
|Mild Peripheral Neuropathy||Mild Peripheral Neuropathy|
|Ataxia||Loss of the ability to coordinate muscle movement|
|Muscular atrophy||Atrophy of the limb muscles occur over a period of time|
|Lower back pain||Lower back pain|
AMN is usually diagnosed in, but not limited to, young men who display weakness and numbness of the limbs and urination or defecation problems. Women may be asymptomatic or may, like men, have problems with mobility and bladder and bowel control.
For doctors to establish proper diagnosis, blood tests must be taken to examine the levels of serum long chain fatty acid. In addition, MRI examination can reveal white matter abnormalities and neuroimaging findings of this disease are very similar to findings of Multiple Sclerosis.
High blood level of Very Long Chain Fatty Acids.
We don't have any tests yet.
Currently there is no cure for AMN; however, there are some dietary treatments that patients are using to help alleviate some of the symptoms of the disease.
Patients also sometimes take a treatment consisting of a mixture of glycerol trioleate and glycerol trierucate, more commonly referred to as Lorenzo’s Oil. This treatment is considered experimental by the FDA and can cost approximately $440 per month. Because of its experimental status, most insurance companies will not cover this treatment.
One biotechnology company working to develop a treatment for AMN is ReceptoPharm, Inc., a subsidiary of Nutra Pharma Corporation. This treatment just completed its Phase IIb/IIIa clinical trial in London, England.
Prognosis varies from patient to patient. Some have only mild symptoms; others are wheelchair bound and suffer impotence as well as loss of bladder and bowel control. As noted above, those with cerebral involvement are more seriously affected and eventually die from the condition.
Stay indoors and away from crowds especially during cold and flu seasons. Besides that, get things right with God, try to understand why you are ‘lucky’ to have this conditon. Enjoy life for as long as you have it! Don’t complain people don’t want to hear complaints! When things seem all out of control and you are at your worst, go to bed and try again the next day! Keep positive mentally and verbally!
I’ve been living with this condition since 2001. Keep positive, stays as active as you can, & just enjoy live with family and friends.
I participated in a study of Lorenzo’s Oil at Hopkins Kennedy Kreiger Center in Baltimore. The purpose was to determine if Lorenzo’s Oil had any benefit for women with AMN. The study was terminated after 2 years when no benefit was found in any of the study particpants. Further more, some participants displayed negative reations. For AMN, Lorenzo’s Oil appears to be a dead end, at least for women with AMN.
It’s free and easy to join RareShare. Click here to signup for an account.
Have questions about RareShare?
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.