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New to Cytoxan (cyclophosphamide)—advice and help appreciated
Autoimmune Diseases | Last Active: Jan 18, 2022 | Replies (24)Comment receiving replies
Hello @mermaid7272 . I see that you’ve been on Connect before but now have a newer question. I hope you don’t mind, i asked one of the administrators to move your question to the Brain discussion where there are several different discussions on encephalopathy.
I, too, had encephalopathy caused by an autoimmune disease that attacked my brain. You are correct, it was so SCARY! But, I’m doing OK as long as i stay on my drugs
Do the doctors know what caused your encephalopathy?
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Went to neurologist, had numerous docs try to figure out what caused this episode , but with no luck-- they said it was a mystery as the tests showed all negative. This is very scary as they can't treat something without knowing the cause.
I am under major stress that it might happen again, going back to that horrible hospital would do me in. The care I received was appalling, every time I think about it relives the horror of what happened.
Sorry to dump on you, it helps to talk about it.