Others out there who have cerebral involvement?

My husband will soon be 69. Was correctly diagnosed with AMN eight years ago. Started having symtons 16 years ago, Last year he had his second MRI done after having one done 8 years ago. The myelin in the corpus callosum is now involved. Had been noticing a few problems, and the MRI confirmed this. Now a year later, it is progressing. Much trouble with anything involving numbers, and remembering things. He is still walking. Experiences lots of pain in feet and legs, Addisons, etc. It is this brain involvement that is getting harder to deal with, for him and myself. Anyone dealing with this as an adult male? Thanks, Sherry

4 Replies

  • I lost my father to this disease 18 years ago. He was diagnosed after 28 days of testing. It started with problems walking to not being able to walk. He also had the myelin issues in the front of his brain. We went from him communicating to him not knowing what day it was or who we were within 6 months. His body slowly started shutting down.

    Please enjoy the time you have left with him. Try to have discussions about important things before it is too late. My father only lived till 52 years old. I am not sharing to upset you but to let you know how quick it can happen to some people.

  • Hi sherry

    Have your Doctors given you any information about the likely progress of your husband's AMN? You don't say if they have.

    As you will read in other posts, the exact way that AMN progresses is different in each case. There seems to be some indication that the longer you go with the disease without cerebral involvement then the less likely you are to get it. But there are no certainties. Perhaps since your husband's recent symptoms have come on a bit later in life, the symptoms you describe may not get any worse for some time. I am 70 and have had AMN for 30 years so I can relate to your situation a bit.

    You will have to try and take it a day at a time.

    Keep us posted.

    With all our good wishes,


  • Chris, thank you for your imput. The neurologist thinks that since my husband was born with this and that his progression has been slow, that it will continue this way in regard to the cerebral involvement. I am hoping that is the case. I appreciate all the advice and support that you give to those who have AMN and to those wo love them. Sherry

  • Hi Sherry. my brother (age 45) has cerebral involvement and it is painful to watch him deteriorate. The rate of deterioration seems to differ enormously but in my brother's case it has been very rapid. Happy to catch up on phone if you like

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