Cerebral AMN
Hello,
My husband has non-cerebral AMN and we have not been able to get a straight answer from doctors as to whether or not it is possible to develop cerebral AMN even though he has been diagnosed with the non-cerebral form. Would appreciate any bits of knowledge on this...thanks
Posted By: Amy
Posted On: Mar 25, 2008 4:08 pm
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Re: Cerebral AMN
Don't think they know the answers yet.......just like the female carriers, some do and some don't. This disease has the ability to rear it's ugly head in many different ways. You might try contacting Dr. Charnas at the University of Minnesota.....but you should know that he will only be there one day a month as he has just left the U to work in industry with a plan to return to the U one day per month just to see the boys with ALD.
Posted By: Cynthia
Posted On: Oct 28, 2008 8:29 pm
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Re: Cerebral AMN
My son was diagnosed at 25 with no cerebral involvement Doctor said that could change at any time) that was a year ago and they are now going to do another MRI because of severe headaches and other problems he is having to see how the brain looks now. We have watched him go down hill the last year struggling just to get through each day. I continue to do as much research as i can to see what options we have. His doctor talked to him about a BMT but i dont know if i want that. He still right now functions on his own and takes care of his 5 yr old but not very well. I started giving him the Mustard Seed Oil on advise from others with this disease. Good Luck and God Bless.
Posted By: dideann58
Posted On: Dec 5, 2008 4:19 pm
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Re: Cerebral AMN
did you notice any side effects from mustard oil? I've heard that it can effect liver. How much mustard oil should be taken per day?
Posted By: NA
Posted On: Oct 7, 2009 4:29 pm
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