A friend sent me the link to this site. Once again, the recovery statistics are off (at least in my case). I'm going to be sending them an update about my experience with ADEM. I thought you might like to also.
Information Prepared by: Office of Communications and Public Liaison National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD 20892
I think the published stats with respect to recovery times should not be given too much emphasis. They're very general and this disorder should -- I think -- be evaluated very much on a case-by-case basis.
I agree that case by case is the best, however, my former employer, my first neurologist (who knew little about this disease), and my family and friends searched the internet for information about this disease. All of them want to know why I'm not well yet. And judging from most of the folks on this group, there are many folks (especially those older than children) who do not have that immediate recovery time. And this is incredibly frustrating. Especially since I was one of those who looked and found that "most people have complete recovery after 6 months." This sent me into a heavy depression when true info that recovery may take awhile would have given me continued hope.
Valid points, Laura. Patient experiences like yours are important, and we don't want doctors in particular to rely too heavily on "the norm." Thanks for posting.
Good point. People read stuff on the Web and use that information as a basis for opinion and action, but some of that info -- particularly the info about recovery time -- is not accurate.
I agree that case by case is the best, however, my former employer, my first neurologist (who knew little about this disease), and my family and friends searched the internet for information about this disease. All of them want to know why I'm not well yet. And judging from most of the folks on this group, there are many folks (especially those older than children) who do not have that immediate recovery time. And this is incredibly frustrating. Especially since I was one of those who looked and found that "most people have complete recovery after 6 months." This sent me into a heavy depression when true info that recovery may take awhile would have given me continued hope.
