850 members555 posts

Stem cell therapy

Here we go, and this is a serious question.

I'll be 45 early next year, if my lesions start to grow, is it worth it with the stem cell therapy?

My neurologist tells me he has a 100% success rate. Then again, I read that the older you are, the chances of success decrease. What is going on?

Has anybody here actually had it?

My brother is walking with a limp, I've told him to get tested. He is likely out as a donor, so I have nobody.

Got on the bus the other day, an elderly woman immediately stood up and offered me her seat. That's happened 4 times now. I took the seat as well

7 Replies

Hi monkeybus, I'm a carrier of ALD, although they say it's X-Linked, I do have some mild nerve damage in my legs. I've passed it to my son, and thankfully, he is well.

I haven't read up on the stem cell therapy, but you say, the older you get, the chances decrease. Is it a case that it just doesn't work, or would it make your condition worse? If it's the former, surely it's worth a go.

Do you belong to ALD Life? They're very good when you have a question.

Karen x


Hi, Monkeybus,

It is a very risky procedure but I think it's best if the disease is caught early! As the disease progresses during the transplant, also they use very powerful drugs (Chemotherapy) I think I'd rather take the risk though!

All the best


Yeah, catching it early is the thing.

MRI every six months, but how much damage could be done in six months?

I like being me. I wouldn't want to be a downgraded version.


Have a look at this

Max in Sweden had a transplant last year with no Cerebral involvement and he is doing good! Also he had a unrelated donor!

There are a few guys in the U.S. Also that are ok!

I have a lesion and I had a scan the end of September but no gadolinium showed up! I've another booked for March, if it gets active I will be fighting for a transplant!

All the best


Cheers, Steven. I even commented on that thread myself.

I'll chance it. Going to die eventually anyway.

I'm 44 and still walking, I'm a lot better off than some of my comrades here on this board. Hopefully the lesions will be just as slow.

Which drugs is it you have to take after the BMT? For the rest of your life?


Who is going the stem cell therapy?


Hopefully none of us will have to undergo it.

I'm just gathering information.


You may also like...