blindness

[bioting]

does anyone here suffer from blindness? my brother is unable to see anymore

[Hidden]

Sadly my sister in laws nephew lost his sight when he was in his early 30s .. I'm so very sorry. Xx

[monkeybus]

Hello bioting. How old is your brother?

The more I learn, this is an awful disease we have.

I'm 44 now, eyesight seems OK, but about 10 years ago I would have blurred vision in the early mornings.

A friend has epilepsy, he complained of the same thing (before his first seizure).

I'm sticking with the industrial strength Biotin. Haven't poisoned myself yet.

My vision is a lot sharper on 4-Aminopyridine as well.

Best of luck to you and yours, bioting.

[bioting in reply to monkeybus]

My brother will be 30 this next February. He does take Biotin and he thinks when he is less stressed his vision is better. Thank you for your kind words.

[deirdrecorr]

I'm really sorry to hear that. My 20 year old son is blind and hearing impaired. He lost his sight when he was 6 years old. If your brother has a hearing impairment, the charity "Sense" can provide a lot of support.

[bioting]

thanks all for your reply. i had no idea that this wasn't so prevalent...am I right? It doesn't seem like it affects a lot of people

[cdp71]

It is very sad that you do not have a doctor to consult with regarding your brother's condition. I believe that blindness is not uncommon for very advanced (or mutated) versions of AMN. It is the hope of me and others on this board that ourdisease does not progress to that level. However, absent an MRI, there really is no way to know what will ultimately happen and even an MRI has limitations. I am very sorry for your brother's condition and hope that it stabilizes.

[SongStream]

Bioting,

I'm not familiar with your brother's condition. From what I understand, one out of four (or 25%) of us males with AMN will eventually progress to cerebral involvement which would then be adult cerebral ALD similar to the childhood affliction with varying degrees and length of progression. I believe that blindness, hearing impairment, difficulty speaking, mood changes and headaches are some of the symptoms. This is why it is recommended that AMN males get a annual MRI. It would show lesions before any symptoms which would then be the time to consider gene therapy (bone marrow transplant).

[bioting in reply to SongStream]

He does have all those symptoms and he gets yearly MRIs at Standford U with Dr. Van Haren. Its a little boggling to me how quickly these symptoms appear. At the beginning of this year he was able to move around at least a little bit and now he needs help even shifting positions. Dr. Van Haren said he couldn't do bone marrow transplant. He said there was not much else to be done in his situation.