Cerebral ALD: My brother and I both have AMN, I... - AMN EASIER

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Cerebral ALD

ggallsup profile image
6 Replies

My brother and I both have AMN, I was diagnosed 4 years ago and have the classic type, spasticity and addisons. My brother who is 7 years younger than myself (me 36) has been asymptomatic until recently. His legs are fine, but recently began having headaches and vision problems. He had a CT scan which showed severe optical neuritis. He has an MRI scheduled this week for a more detailed diagnosis. Is this a common issue for cerebral ALD?

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ggallsup profile image
ggallsup
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6 Replies
COwithAMN profile image
COwithAMNAdministratorAMN EASIERVolunteer

Hi there

I don't have a view about the optical neuritis though I see from a search that it's associated with demyelination in, for example, MS. I think it's best to wait for the MRI which will tell you much more. Thankfully we don't have much experience with cerebral ALD in adults.

Please post further details when you know them.

Very best,

Chris

ggallsup profile image
ggallsup in reply to COwithAMN

Thanks, Chris.

monkeybus profile image
monkeybus in reply to ggallsup

I Googled optical neuritis as well. A new one on me, but I wouldn't put anything past this disease.

That said, I get regular blurred vision, mostly late at night.

And I always had regular headaches, since I was a kid. Neither worries me (yet)

DeanLM profile image
DeanLM

Get the MRI. But is probably best, to talk with a neurologist.

monmon profile image
monmon

Wait wait wait! It's true the eye is located in the head but optical neuritis is an inflammation of the optical nerve (due to demyelination or other) the brain (white/grey important matter...) has not necessarily been affected. So I would well wait before calling it 'cerebral'. Fingers crossed to you and your brother.

fightald profile image
fightald

He should be tested for adrenal insufficiency too.

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