AMN and Leukodystrophy: I've gotten more confused... - AMN EASIER

AMN EASIER

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AMN and Leukodystrophy

nan17 profile image
7 Replies

I've gotten more confused than ever! My metabolic specialist just told me I have AMN and I don't have Leukodystrophy. I thought AMN was a type (or subsection) of Leukodystrophy. Does anyone know what the difference is between them? Thanks for all your help and interesting discussions. Nan

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nan17 profile image
nan17
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7 Replies
StevenSims profile image
StevenSims

Hi,

AMN is when only the spine is affected just lower limb spasticity and bladder problems but ALD is when the brain is affected it's most common in young boys but adults can also be affected, I'm 41 and I have a lesion in my brain but has been stabile for 5 years! I'm hoping it will stay that way! When I was diagnosed I was told I have ALD but they were wrong it's AMN.

All the best

Steve

nan17 profile image
nan17 in reply toStevenSims

Hi Steve,

Thanks! You explain it so clearly. I recently had an MRI and my brain is in great shape ;-). I think they are all still working their way through identifying and clarifying AMN/ALD. I bet a good percentage of MS folks actually have what is now called AMN. I hope that brain of yours keeps cooperating. Nan

COwithAMN profile image
COwithAMNAdministratorAMN EASIERVolunteer in reply tonan17

AMN was diagnosed in the past as MS but I think there are probably many fewer nowadays. And of course they are quite different diseases in terms of what causes the myelin or axon damage.

AussieBob profile image
AussieBob in reply toStevenSims

AMN IS a Leukodystrophy Tell him to go back to medical school. AMN is another form We have childhood cerebral form the vicious childhood form. AMN is the adult form which affects the spine and can be cerebral Most carrier wonen are affected as well but not cerebrally It is readily explained on all professional sites and I suggest that you go to ALDConnect. org for an easy explanation. I hope this puts it to bed for you kind regards

StevenSims profile image
StevenSims

We have the ALD Gene but there's different mutations of the same gene!

DennyB profile image
DennyB

My belief that AMN is a type of a Leukodystrophy. Most so called specialists don't know any thing about these conditions. I have AMN and it has the same conditions as ALD without it affecting the brain.

tieaknot profile image
tieaknot

X-ALD is (adrenoleukodystrophy) is most definitely a leukodystrophy. AMN (adrenomyeloneuropathy) is a phenotype (how it presents) in some cases and as cerebral ALD in others (the cerebral form most often (but not 100%) limited to boys or men). Other phenotypes of ALD include asymptomatic and "Addisons only" (adrenal only without other symptoms). So Leukodystrophy is the overarching "title" that includes many different conditions/diseases, X-ALD is the subtitle or specific Leukodystrophy (involving the ABCD-1 gene), and CALD, AMN, "Addisons only", etc. are the chapters or presentations of X-ALD.

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