So what is is called?

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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So what is is called?

Postby carrieanne » Tue Aug 11, 2009 8:18 am

How would you say it? Would I say "I was diagnosed with", "I was found to have", "I came down with" ADEM? Is it a condition, a disorder or something that just happened that left residual damage? I've always been confused with how to say this when speaking of my ADEM. is it a tag that is on me for the rest of my life then? I do have bladder and bowel damage from it that I will have the rest of my life I am sure but everythign else is I guess back to normal, hell, I can't remember now honestly, its been over 2.5 years since it happened and I have adjusted to how it is now. Should I have a medicalert bracelet or pendant? Is it that important? Like I said, almost all is well. In times of stress and fatigue I get a big ache up my neck into my brain (okay, maybe not actually INTO my brain, you know, more the base of my head but it feels like my brain).

I am thinking of this more and more as I am pregnant (19 weeks today and quite unplanned but very much wanted since it came to my knowledge) and not sure what will happen once labour comes though my OB doesn't seem very concerned. We don't even know where my lesions are. Most Drs. I've spoken to don't even have an inkling of what ADEM is or even TM. They keep calling it MS but its not and they can't seem to grasp that. From my research, ADEM and TM or non-degenerative whereas MS is.
Carrie
34 year old mom to 4
ADEM January 2007
carrieanne
 
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