Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more


cindil Message
24 Mar 2015, 11:43 AM

My husband was diagnosed with AMN 10 years ago and now has been having dementia problems, ie. not remembering who friends are that we have known for more than 30 years when I mentioned their names. Is this prevalent with AMN ?
Aish Message
25 Mar 2015, 10:00 AM

Hi Cindil, Unfortunately, yes it is for a large percent of AMN patients. If the lesions which affect the spine and cause the walking problems start to occur in brain then dementia can result. If you check out the FAQs on the website there is some information on it there. How old is your husband and how far have the physical symptoms progressed so far?
cindil Message
27 Mar 2015, 12:25 PM

He is 62 years old and is still ambulatory, however, his gait, strength and balance have all declined in the past year. The neurologist who diagnosed him said he has a benign disease progression. He had an MRI of brain 6 months ago which did not show change from 10 years ago. Will probably need another MRI sooner rather than later. Is on Aricept but doesn't appear to be helping.
bsc78 Message
29 Mar 2015, 02:13 PM

Hi Cindil, I don't know if your neurologist is very familiar with AMN, but John Fink is in Ann Arbor, Michigan, and an excellent neurologist very knowledgable in axonopathies of the spinal cords and AMN. I also don't know where you live in Michigan, so this may not be feasible. But I think it's important to see doctors familiar with AMN specifically. is trying to put together a nationwide network of doctors up-to-date on the latest AMN news and treatments. The website may also be helpful. Wishing the best for your husband.
Aish Message
31 Mar 2015, 11:01 AM

Hi Cindl It seems strange if the MRI was ok and his physical impairment seems to be not exceptionally bad for his age so I would do as bsc78 suggests and get the opinion of an AMN specialist. You could also contact Kennedy Krieger and ask them to review the MRI for you if you get it put on a disc and post it to them. They have a more sensitive machine than most hospitals. It may be that his forgetfulness is unrelated to AMN but best to get a proper opinion. Hope all goes wel.
dryder845 Message
5 Apr 2015, 08:35 PM Is also a great resource. Our Doctor in Boston Mass is connected with the other specialists in this field. We travel 5 hours each way every 6 months to see the specialist. Well Worth IT!