Hey gang,
Sorry I've been off-line awhile. We moved to a new city-state, and are still trying to get settled in.
Meanwhile, I'm having to find new doctors, and sadly this city also has no specialists in ADEM. I went to a neurologist who tried to tell me that I DON'T have ADEM, just sleep apnea, as people my age don't get ADEM. I informed him of this group and our over-10 year old members, and he "respectfully" disagreed. Sigh.
And one of the residual side effects I've been having post-ADEM is cluster headaches - TERRIBLE pain that usually drives me to the ER for meds. The new state requires a doctor to prescribe the meds I take, and he flat refuses, saying I have to find a neurologist... and we're back to square one.
I'm very fortunate that my physical effects have diminished over time, with the exception of morning legs not working well, dizzyness and tiredness, but how do you convince a new doctor (and Social SEcurity for that matter) that you have cognitive, emotional and memory issues that are problematic?!?
Also, my husband and I have signed up for the 2015 Rare Neuro-Immune Disorders Symposium to be held in Dallas TX in October. If you have questions/concerns/thoughts/comments you'd like me to share, please feel free to reply or private message me. I'll keep a running list.
I hope you're all hanging in there. God knows I'm trying to. :)
LauraK
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