Is there some recurrences ? And what could I do?

Hello, I was an M.D., PhD. when I got a Susac Syndrome, so I perfectly well understand what happened to me and why information is not collected yet.
I’m trying to live the best as I can; for me and my 8years’ daughter.
I would like to collect as much information as I can… Because organization (and statistics) is part of the solution !


It is something we don’t know simply. At the moment.
The answer will come from the statistics: we have to be organized.

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I’m trying to locate you in care place no luck any way I have had Susac D=
2001 was diagnosed with it Feb 2002 it is no fun my Nuro. Dr is not as
good as I had before I guess she is fine but her assent does not due her =
has made a lot of things had on me the past couple of weeks.=0D
Ask me any Questions I had had a lot of things happen to me I had cemo an=
IVIG AND MRI’S Physical Therapy I was taking steroids to long now my musc=
have gotten weak it it takes a long time the get the steroids out of your
system. So ask away I will try to answer all you Questions. =0D
I’m 42 now when I got this I was 36 my youngest son was 18 months old my
oldest was 11/2. I have a really negative husband which does not help me =
like he should. I due a lot for my boys there is a lot to talk you about
this disease. I was walking fine gained a lot of weight from the steroids
but now off of them I’m the size I should be a size 8/10 I was a 18-20 wh=
on all the med.s.=0D
I hope to talk to you with God’s help I have made this far my kids are a
handful but getting older and understand a lot now.=0D
I had to walk with a walker for 6 months my balance was getting so bad th=
I went to a 4pointer cane and now just a cane but I fall a lot If I don’t
watch what I’m doing. I try to due my exercises but I really don’t have t=
energy to due a lot now I’m really tired I due all the hose cleaning and
cooking but not enough for my husband at all we fight a lot which is not
good on me at all.=0D
Well I love talking to people about the illness and compare and maybe I w=
find out more.=0D
I went to see Dr. Susac 2 years ago I was a blessing to see him. He is a
great man he said there is no reason why I can not go back to work my
husband will not let me go back to work I was working on computers on
graphic software for the printing industry I was doing really well.=0D
How due you think you got this? I was told by Dr. Susac that something go=
into my blood stream live a spider bite.=0D
Take care I hope to talk to you real soon.=0D
Linda Hamilton=0D
15337 Madison Pike=0D
Morning View 41063 ,KY=0D
-------Original Message-------=0D
From: icaredb=0D
Date: 4/25/2008 3:43:44 PM=0D
Subject: [susac] Is there some recurrences ? And what could I do ?=0D

That is one question I’d like to ask… how do you think this all got started…

Thats interesting that he said spider bite???


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I’m so sorry I have not got back to you until now I’m so busy with my fam=
and my pain in my legs and my feet I really can not sit still because wh=
I due I get really stiff.=0D
I have been getting e mails from Quentin Paulu she from another country
Belgium - Europe she is now doing research on Susac Syndrome she is kind=
pushy I guess in her own way.=0D
All the time I always have at the end of my emails my name address and
telephone number and guess what she called my house twice now I’m so busy=
and out I did not get to talk to her good thing I would probably will not
understand her from her messages she left on the phone.=0D
I have talked Lana from Florida very nice women to talk with she is young=
m 42 but I don’t look like it I guess my kids keep me going or try to all
the time.=0D
Well off back to my son’s school I help out a lot there I waiting for the
news letter to get done so I can make copies for the whole School to take
home today to there parents.=0D
Stay in touch.=0D
Take care I get well and then my pain comes back I can not walk a lot.=0D
-------Original Message-------=0D
From: kkeggy=0D
Date: 4/25/2008 8:42:03 PM=0D
Subject: Re: [susac] Is there some recurrences ? And what could I do ?=0D

Hello everyone, My sister was diagnosed with Susac about one year ago. he had been having issues for several years but the doctors could not figure out what the problem was. As a family member, I would love to take this from her, but we all know that is not possible. I am hoping that information can also be a key to helping her. She has been on steroids for years, and they started the IVIG about a year ago. She has lost most of the eyesight in one eye, and also all hearing in one ear. She now is in a wheelchair for long walks, and a walker for shorter ones. Her husband and her are no longer together, this disease was his undoing. She has two younger children. She had been treated at Mayo, but her insurance refuses to pay, so only her Neuro is there and they will only pay for four visits a year. She has terrible headaches with the IVIG. Can anyone add any suggestions or maybe just talk?