Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

ALD / AMN

AA
0 Recommendations

Is there anybody who can share good experinece that ALD or AMN was cured and myelin was repaired?

Explore topics in this discussion:

Paralysis Bone marrow transplant

9 replies

marinemomkerry

myelin regrows its the axon on the nerve that cannot regrow

Quiller

My son had a bone marrow transplant in 1991. this August he was married ! He is doing great, working , living a normal life.

wenALD

I'm wondering how many of the kids that had bone marrow transplants would have done fine without them. My sons did not have transplants and were diagnosed in 1986. They are both still alive. The 29 year old is married and doing well, and the 35 year old who was most affected, is still alive and doing well compared to so many who have had bmts and gone downhill fast. He is not blind, can still walk, and hear. He is not too communicative, but he watches tv and laughs

Quiller

My son was already having many difficulties-as it was told to us he was on the top of the slide-one month more and he would not have been accepted to have a BMT. My brother died in one year from 1st showing symptoms so I feel very fortunate we noticed things and he was diagnosed and referred to MN. Our son also had a perfect match donor-his brother so that made a differnce also in graft vs. host. Not that it was a breeze but I know the other outcome and feel so lucky . I know others who had successful transplants as well as some whose weren't but because each boy was at a different stage and because ALD is different in different boys and the donors are not always a perfect match the outcomes cannot be predicted . I am so happy your son is still smiling and hope your other son does not ever have AMN either. Best wishes

AA

What symptoms you son had / has? Was the disease progressing? How bad is the brain damage? Can they live normal life now?

AA

What symptoms you son had / has? Was the disease progressing? How bad is the brain damage? Can they live normal life now?

wenALD

I was told by Dr. Moser that my son would progress rapidly and die within 6 months when he was 12, due to the symptoms he was showing. He is now almost 35, and within the last few years isshowing progression. The myelin has affected diverse areas of his brain, and the doctor says that there is nothing we can do. He only smiles and laughs when watching Seinfeld and Two and a Half Men on TV! He does not say much to his father and I, who he lives with. "I don't care" is interpreted as "Yes"! He eats what is given to him, sometimes walks 2 miles to Starbucks, but mostly sits around and watches TV. He looks depressed, and we have no answers.

My younger son is married, working, and just starting to have balance issues the last few years. He is almost 30 and has no brain involvement.

blissboys

Quiller,
I'm also very curious about your son's transplant. What symptoms did he show before the transplant? If he did show symptoms such as loss of balance, partial blindness, etc...this gives me hope that the bone marrow transplant can really help. You said that he is doing well right now, correct? How old was he when he had his transplant?

Fernbird

Kia ora, my grandson was noticeably symptomatic before he was 2. He had balance issues and developed some right-sided paralysis from white matter development. He still doesn't use his right hand, but can move the arm and walks with the common ALD limp. His verbal development regressed and he has Addisons which almost took his life (due to non-diagnosis). He underwent BMT in January 09 and is making a major return to full health. I say that with some confidence as I have kept my gaze firmly fixed on my precious grandchildren. It was this concern that pushed my daughter and our specialist to do more tests. At times, it felt as tho I was the only one seeing his clumsiness, darkening skin colour and failing motor skills.

I can gladly report that he is starting to make words again, his balance has improved (doesn't need the helmet so much now) and with physiotherapy, splints, etc his right side motor skills are improving, day by day. The progress is as rapid as was the deterioration. So yes, BMT is a valid lifeline for symptomatic ALD sufferers. There is a cut-off point though, so you don't have a whole lot of time to decide. An option taken when there is no other. My grandson is the first in my family to undergo BMT. In my tribe/extended family, we have lost many boys to ALD - before and after birth. Geneticists here in NZ, used to only advise terminations of +ve male foetal tests in the 90s. I thank god for the better informed, Metabolic/inherited diseases paediatrician we now have.

X-ALD/AMN is a time-bomb, especially for our symptomatic men. More often deadly, less often not. With all that we know now, which is light years in advance of what was known in the early 90s, there is still much more to learn about the condition. Identical twins have been known to manifest significantly different levels of severity of the condition, one with the severe form and the other only mild adult symptoms. I think 'severity' is still the most random aspect of this condition and requires more/ongoing research. Perhaps forums such as this could make useful contributions, as it helps to identify and centralise a wider ALD community network. Regardless, with LO+diet I hold much hope that my older grandson will never present severe symptoms. I guess only time will tell.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You