My name is Jacqui My boyfriend Ryan who is 24 just recently got diagnosed with Susacs Syndrom in September after a long back and forth diagnosis of MS and A.D.E.M. I joined this web site in hopes to find him someone he can talk to and relate to about this whole disease. He is really scared and just wants to hear from someone else that yes there are other people going through exactly what he is going through. He is deaf in his left ear and partially blind in his right eye, his memory is horrible, hes always tired, gets really bad headaches, and is just miserable all the time now because of Susacs. He is currently going for monthly treatments of IvIg and Cytoxan. he also takes oral steroids and zoloft. from what we went through over the summer til now he has made a big improvement he was at the point of not walking and didnt even know how old he was and hallucinations.He doesnt remember 3 months of the entire summer but now hes going through all new struggles like the hearing, momory and the eye sight and just doesnt think the treatments are working we tell him they are but he just wont believe us so can someone out there who can relate to this please talk with him about this and reassure him that yes he will be ok and he can fight through this!!! we share this name so whatever anone can write he just is really scared
Hi, my name is Seferina and my 25 year old female cousin was diagnosed with
Susac in may of 08 and she was pregnant, the baby survived and is fine. She
is blind in her right eye and little vision in her left, lost her hearing in
both ears and just recently got one hearing aid. She to is on monthly ivig
treatments and oral sterioids, she has tried a lot of other things. She is
getting a little better but she too doesn’t see the improvement. I think
its because they lose the abilities they are use to so fast and the recovery
is so so very slow. I have been trying to find out anything that would help
but it is very hard and it is a struggle. But I think they will get better
because they have someone that loves them and wont let them give up. There
is a book called the MS recovery diet by Ann D. Sawyer and Judith E.
Bachrach I think it has a lot of good info even if Susac isn’t technicall ms
it does carry the same symptoms so I really believe that the diet and
physical therapy and mind mempory games will really help but I know it
requires a lot of patience and faith. God Bless you and your loved ones, I
am hear to share and hear any info you are needing or even to vent.Thanks.
-----Original Message-----
From: JacquiNryan [mailto:susac-cpt11258@lists.careplace.com]
Sent: Thursday, December 04, 2008 9:05 PM
To: rivera.seferina@comcast.net
Subject: [susac] anyone please
Hi, my name is Seferina and my 25 year old female cousin was diagnosed with
Susac in may of 08 and she was pregnant, the baby survived and is fine. She
is blind in her right eye and little vision in her left, lost her hearing in
both ears and just recently got one hearing aid. She to is on monthly ivig
treatments and oral sterioids, she has tried a lot of other things. She is
getting a little better but she too doesn’t see the improvement. I think
its because they lose the abilities they are use to so fast and the recovery
is so so very slow. I have been trying to find out anything that would help
but it is very hard and it is a struggle. But I think they will get better
because they have someone that loves them and wont let them give up. There
is a book called the MS recovery diet by Ann D. Sawyer and Judith E.
Bachrach I think it has a lot of good info even if Susac isn’t technicall ms
it does carry the same symptoms so I really believe that the diet and
physical therapy and mind mempory games will really help but I know it
requires a lot of patience and faith. God Bless you and your loved ones, I
am hear to share and hear any info you are needing or even to vent.Thanks.