Bone marrow transplant

[HenryW]

Hello,

I am 60 years old.

I have been struggling with AMN for over 35 years.

I am wheelchair bound, but can still stand.

My symptoms have been stable for many years.

In a few weeks, I will be getting my first MRI in 30 years.

I am afraid if the results are poor, I will have to get bone marrow transplant.

Has anyone here gotten a BMT?

How often do doctors recommend BMT for AMN?

[mariagno]

I have not had an MRI in 5 years. I am highly claustrophobic and have to dead to go into one.

My last one was at 54. Hugo Moser said the older you get with no brain involvement, the lesser likelihood you will not ever have brain involvement.

I asked my neurologist what he thought.

He says if I am worried about lifespan, get one. If not, don’t.

I will probably do one in three years.

For you, unless you feel different, 30 years s a long time to see effects.

Get it, I would guess anything severe is not there and likely to be OK.

Best of luck!

[cfox]

I always find it nerve-wracking to get an MRI and wait for the results. In those times I can't help but imagine the worst case scenario and what that would entail, so I understand your concern.

Here is a study that looked at factors affecting the success of BMTs in adults with cerebral ALD:

academic.oup.com/brain/arti...

According to that article, age and disease progression (as measured by mobility) correlated with worse outcomes, so if your MRI showed cerebral involvement you would probably need to have a serious discussion with your doctor about whether the potential benefits would outweigh the risks.

There are also cases where cerebral disease spontaneously stops, even without a transplant, so there is hope even without a BMT:

ncbi.nlm.nih.gov/pmc/articl...

But it's probably best not to dwell too much on the worst case scenario.

I'm hoping for the best for you.

[HenryW in reply to cfox]

Thanks

[Aaron98 in reply to cfox]

Thanks for sharing that article. This was of great interest to me from the article:

"Specific complications during stem cell transplantation included deterioration of motor and bladder functions (n = 12) as well as behavioural changes (n = 8). Arrest of progressive cerebral demyelination and prevention of severe loss of neurocognition was achieved in all eight survivors, but deterioration of motor function occurred in the majority (n = 5)."

I've never heard this about BMT, specifically. Does anyone have any more information on why the stem cell transplant process itself causes deterioration of motor and bladder function? Goodness, it sounds like this is pretty much a "damned if we do, damned if we don't" situation.