My daughter was diagnosed 5 months ago with Susac and she is 17 years old. She also has fibro mialygia which with the migraines makes it unbearable sometimes. Our doctors have never treated this and I don’t feel confident in them at all. We live in Southern California, does anyone know of any health care here we can go to?
desperate for help.
Candida mom of Laura Lynn
Hello, I am very sorry to hear that your daughter is suffering. Because
susac is so rare the docotr’s do not know much about it. My cousin takes
regular doses of IVIG and that seems to help her to some degree. I read a
book called the MS Recovery Diet, and do think that since susac is a cousin
or a stream from MS that this book can help you with your daughters diet. It
is not a diet per say but some foods trigger your body to react. I do
apoligze I couldn’t be of more help. Research the medication your daughter
has to take for side effects or if they don’t work together.
Sincerely
Seferina Rivera
-----Original Message-----
From: nalani [mailto:susac-fft-11757@lists.fireflyhealth.org]
Sent: Saturday, February 28, 2009 8:46 PM
To: rivera.seferina@comcast.net
Subject: [susac] Help