Discussions By Condition: Medical Stories

Susac's syndrome

Posted In: Medical Stories 0 Replies
  • Posted By: Anonymous
  • November 10, 2009
  • 08:08 PM

I was a 21 year old female and it was January of 2008. I was having several headaches and so i went to my PCP and my doctor told me I just had migraines. It just got worse after that. I was having some really bad left ear pain, dizziness, restlessness, headaches. I had no idea waht was wrong with me, so I went to an ear doctor and he sent me to the hospital to get a MRI. After I got out of my MRI they put me in a hospital bed and I was there for 8 days. They first diagnosed me with acute disseminated encephylomylitis. I had inflammation of my brain with a lot of white matter mostly in my corpus collosum. The doctors told me I had a mini stroke in my corpus collosum and my left ear cochlea. I lost part of my hearing in my left ear, could nto walk straight, coulnd't do things a 2 year old could do, couldn't dress myself, shower myself, etc. I went from being 135 lbs to almost 100lbs. I lost all my muscle on the left side of my body. After I got out of the hospital, I saw many more doctors and some doctors were saying I had actue disseminated encephylomylitis and some were even saying I had Multiple Sclerosis. I recovered from those stroke and in June of 2008 I was having some blurred vision in my left eye. The next morning when I woke up, part of my vision was gone in that eye. I went to my eye doctor and he said that it was probably from my headaches and that it should come back within a few days. So, I just let it go and went on with my life. Things were just not getting better, so, my mom was getting very angry and she made me an appointment at the Mayo medical center for July. I went to Mayo and was there for 4 days. I saw an ophthalmologist and 2 neurologist. The doctors thought I had a disease which is called susac's syndrome and after 4 days of being at mayo, that is exaclty waht had happened. So, after 8 months of going through all of this, I finally got diagnosed with something. Has anybody ever head of this? This is a very interesting disease and is very very rare. If anyone has any information about it, e-mail me at angel2237@live.com. Thanks so much!!

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