AMN Cerebral

[bioting]

Does anyone have any experience with AMN with cerebral involvement?

[yankjeter]

My husband has AMN With cerebral involvement. Signs started about six years ago. Difficult for him and for me, especially the last few years.

[bioting in reply to yankjeter]

my brother also has the cerebral kind and in a matter of a year he went to being able to walk slightly to being completely immobile and his speech is worst every day. He can bearly speak at this point. Did it progress this fast for you?

[yankjeter in reply to yankjeter]

My husband did not show signs until age 52 and was not diagnosed correctly until 59. The cerebral part was slower with him and he can still talk, but very confused. Perhaps because the onset was later, things have progressed slower.

[dryder]

My father had the cerebral involvement. Within a year he went from ok to not walking, then dementia and then gone.

Please keep in mind that Everyone is different and the progress is different for everyone.

Keep the faith, people are working on a cure....

[bioting in reply to dryder]

I try but its not easy at all. thanks for the input

[robymastro]

hello.one question: the patient you described with cerebral involvement, have used Lorenzo's oil? thanks

[bioting in reply to robymastro]

No he does not as it has no benefit to him at all.

[robymastro in reply to bioting]

so he never used Lorenzo's oil or in the past he took it?

[bioting in reply to robymastro]

He's never used it bc there is no proven benefit

[COwithAMN Administrator AMN EASIER Volunteer]

Cerebral involvement is generally regarded as not a good diagnosis. However, a lot depends on the progress at which the cerebral affect develops, and, as with everything with AMN, this is not something that is predictable or consistent.

Years ago, the view was that there was not much that was possible once this stage of the disease had arrived. Nowadays, increasingly, there seems to be the potential option of a bone marrow transplant, despite the risks involved. This might be a worthwhile option to discuss with your medical consultant.

Lornzo's Oil has has no proven benefit for AMN, with or without cerebral involvement.

We wish you all the best.

Chris

[bioting in reply to COwithAMN]

Our doctor has said already there is no way bone marrow transplant will work. It is progressing really, really fast so one could only hope for a miracle at this point.

Thanks for the input.

[dryder in reply to bioting]

So sorry, I'm know how difficult it is to watch the person you love suffer. I spent as much quality time as possible and had long discussions before he stopped having the ability to do so..

[HenryW]

Hello,My understanding is that most amn patients have some damage that shows up on a MRI.

How do doctors know that some have the more harmful cerebral involvement that can lead to a rapid decline?

[monkeybus in reply to HenryW]

I have three lesions. Two on my Occipital Lobes (which I am informed is one of the hallmarks of AMN), and one lesion on my Left Frontal Lobe (this affects language and epilepsy. I have zero problems with language, but I had one epileptic seizure).

But, I believe is is lesions on your Corpus Callosum that signals the end.

kenhub.com/en/library/anato...

I have an MRI every six months, on the dot. My lesions are stable. I've had the brain stem reaction test, this proved I have brain damage.

"Nothing to worry about", said my neurologist.

Likely, we all have some degree of brain damage, what worries me more is my spasticity, spasms and constipation. Some of us are in pain, throw in erectile dysfunction as well.

I never think about my brain, I have bigger problems for now.

But, I look after my body. No booze, smoking, trans-fats, etc. I live well, but Alzheimers runs in my family. I fully expect either myself or my brother to go downhill sooner or later.

The human brain, featuring the Corpus Callosum.