My husband has had vision loss, hearing
loss, tinnitis, vertigo, along with some
other crazy symptoms. The doc has said it
is a possible case of Susac's Syndrome.
He is taking prednisone, warfarin, and now
cellcept. He basically has swelling in
the blood vessels in his eyes that are
causing vision loss. The doc believes
there is some kind of autoimmune disorder
going on, but he has not tested positive
for Lyme or lupus. This has been going on
for 3 years and it's been quite a road of
many ups and downs and different tests.
I was just curious if anyone has any
similar experiences. We just keep going
to see different specialists. We've seen
and ENT, a number of different eye
specialist, vascular specialist, and we
are supposed to go see a rheumatologist
along with a visit to Johns Hopkins. Oh,
and an allergist too.
I am also nervous about the possible side
effects from all the meds, especially the
prednisone (100 mgs right now) and the
cellcept. They are trying to get the
swelling under control at this point to
save his vision.
Thanks for any input! kt
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Toniel
New User, Becoming EHEALTHy
Joined: 28 Aug 2008 Posts: 1
Posted: 08-28-08 14:46pm
Hello Kt. I hope your husband is better
now. Really SS is a very rare disorder
that also present the problem that most
physicians have little or no experience on
it.
I am interesting in knowing your
experience not with the SS but before it.
What was the previous situation of your
husband before the onset of the disease?
Was he stressed, with a lot of work o
similar? Please describe me his situation,
his work, his life... Has he other
concomitant diseases or treatment?.
I know also another case with a good
outcome and we could share our
experiencies.
