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New to Cytoxan (cyclophosphamide)—advice and help appreciated
Autoimmune Diseases | Last Active: Jan 18, 2022 | Replies (24)Comment receiving replies
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.
Replies to "Went to neurologist, had numerous docs try to figure out what caused this episode , but..."
@mermaid7272 I found this older discussion that you may want to read. Wendy talks about encephalitis which caused her to have many of the same symptoms and experiences as you.
https://connect.mayoclinic.org/discussion/social-media-summit-scholarship-essay-wendy-station/
What do you think?
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@mermaid7272 I’m so sorry that I didn’t respond earlier, but i just wasn’t able to. I can only imagine how frustrated and scared you must be. Doctors didn’t pay attention to me either, until i ended up in the ER in bad shape. I have since learned that ER doctors can deal with real emergencies like gun shot wounds and car crashes, but they have never learned the intricasies of unusual diseases.
Can you see if there is a ‘medical center of excellence’ in your area or a university hospital? Ask your doctor for a referral or just call the hospital (like my husband did). You can even call Mayo Clinic and ask if they have and graduates practicing in your area
I really worry for you and want you to find help soon. Will you continue to stay in touch with me?