Susac Syndrome

[redhead28]

i am sure you are asking yourself what type of syndrome this is. I csn tell you how it has effected me. I do know this isnt hereditary and is very rare. I have vision and hearing loss.  It is predominant on my left side. When i first started having alo these symptons i was tested for about everything under the sun. My symptoms did in some ways mimic MS. The dr did an MRI and it showed 4-5 mini strokes. I also have memory loss and bouts of mild to moderate confusion.

[Blessedanyway]

If anyone knows a Susac  Professional who can look at all the test results and give an educated diagnosis, please let me know. I've gone through the grills discussed above, and now all the Susac, "what is that?" business. Now the roller coaster starts again, but the medical relief does not. Sorry, today I've rested all day, but still exhausted. Thank you for any help or referral.

[shan75]

omg i just read your comment...my hubby has susacs according to a mri with spectroscopy...but i think he has had it for years..
in april 2001 he had central retinal arterial occlusion andlost the vision in his right eye...fromthat point on he was having ministrokes.....and then they went on to say he had a psych disorder..
last mri in spet of 2008 stated a demyelinationg process going on typical of ms...but not excluding  ms... well the mri with spectroscopy showed on oct 22...the possibilty of susacs syndrome...fro awhile there we thought he had ms...but all his ms testing labs came back all clear
spinal fluid clear....and all the blood labs clear... how do u go about with your days...
his days are sleeping nonstop....and gait troubles...speech...confussion...migraines.....major vertigo...collapsing from the vertigo...tinnitis.....swooshing sound in hsi brain too.. he has 2 lesion on the corpus callosum on his brain.....

Shannon

[santana8]

Hi, saw your post and just had to answer. believe it or not I am familar with Susac's syndrome. I recently studied up on it as I beleived it might be a possible diagnosis for me.
I had my neurologist check into it as I felt I had a lot of the symptoms. Two years ago I had an accute onset of what I refer to as confused vision. I was standing in the store, looking at prices,when suddenly I became confused about what the numbers were.Eight months and two ER's,six eye doctors,two neurologist,a hearing specialist,and a neuro-opthalmologist later I still don't know for sure what my diagnosis is as I am stuck between two, ADEM AND MS. But since the hearing tests were all normal and the opthalmologist ruled out  BRVO( branch artery vien occlussions) the white matter lesions in the corpus collolum in my brain were not in the right place for Susac's, This pretty much ruled this out in my case. Just wanted to write you to tell you I know quite a bit about it as I studied it a lot to see if I might have it. I do have one question for you though. I read what you said about the 4 or 5 mini strokes that they saw on your MRI. Do you know how they can tell the difference in white matter demylenating lesions and infarcs from mini strokes? If you need my help on the susac's let me know. you can message me If you need to.
santana8