Susac syndrome Member Introductions

Hi, I had Susac Syndrome since Dec 2001 and I have a few questions to ask susac’s. But I can’t get any good answers from them b/c of all the crap from that site. I have a lot of problems walking I was walking fine and then I gone down hill went to a walker and then a cane then they were saying that they would get off of it but it did not work out that way.
I want to be connect with any one that can help me out.
xoxo
Blessing
Linda Faye Hamilton

my partner Jen has Susac syndrome since april 2006

My sister was diagnosed with this in 2000 and is still dealing with the longterm effects

I was diagnosed with Susac Syndrome a year ago. I would like to chat with others that have the same syndrome.

Hi,

I was diagnosed with Susac’s back in 2001; subsequently I have been told that I may have a degree of both Susac’s and MS.

Sandy

I have had Susac’s Syndrome for some four years now. I have been wheelchair bound (although not now) and I have lost the sight of one eye. I am determined to come out the other side of this horrible disease and to return to a healthy life and lifestyle. I visit hospital every 28 days for Intragram treatment and I take steroids. This treatment I believe is very helpful in coping with the symptoms the disease throws me.
Update: 30/1/2008
I have been working full time now for over a year in an executive position in a large company and although some days are a tremendous struggle, I find it is better to occupy myself and my brain to combat the effects of Susac’s. Interestingly, I find I have become a bit dyslexic during the last couple of years and reading other peoples typed messages with Susac’s, this seems to be a symptom with everyone. I have been a professional writer for some 30 years and and I have noticed these problems starting in the last two years. However, I am very careful and recheck everthing I write. How do I cope with working you may wonder? Well I struggle to stay awake in meetings most times and I struggle to beat the terrible tiredness Susac’s brings - but somehow I get through a day and it helps me to be working. Noone at work knows I have this disease and if I get really desperate I find somewhere to have a sleep for twenty minutes. I will not let Susac’s ruin my life and I will not let myself stay at home and wallow in the symptoms the disease brings. My specialist has told me to keep on working and I must extend my brain by contunally challenging myself and I will eventually beat some of the symptoms and will then find myself on the road to remission. I am very proud of myself in how I am handling my severe problems.

My daughter was diagnosed with Susac today. She has been having problems for 4 months, which they thoughts was MS at first. She has a hard time hearing, gets dizzy and walks with an unsteady gate.

I was diagnosed with Susac’s Syndrome in october I am interested in talking with people who are going through the same thing, since it is so rare it would be great to hear from other susac’s sufferers. So far being on prednisone 60mg since oct. i jsut started tapering, and am on IVIG and my doctor now wants to start me on cellcept, everything has been at bay and no new flare ups. I hope it stays the same I have an MRI this week to see if anything new is going on in my brain.

Hi Melissa.
I’ve had Susacs since 2000. It has mostly effected my eyesight-I just had another episode about a month ago, so now I’m on 40 mg prednisone and doing the IVIG thing monthly again. This is the fourth major incident I’ve had over the years. Most of my eyesight does eventually return, but my doctors are cautious since the occlusions are getting closer to the center of my vision. It used to only effect the peripherals of my vision. I was in remission for 3 years, and I then recently switched from IVIG to Cellcept but I had another episode. True, IVIG is very expensive, but it has definitely kept the disease at bay for me. Everytime I’ve gone off of it I’ve had an episode 3-4 months later. But I have heard good things about Cellcept, it just didn’t work for me. I may try Rituximab next-it is used for autoimmune diseases and you only need 2 infusions of it which are supposed to last indefinitely. Sure beats monthly infusions of IVIG!
Nancy

Hi Everyone:
I just had my first infusion of rituxin at NYU Medical Center this past week. I had IV steroids first, to prevent any allergic reaction to the rituxin. It went well. I am to have the second infusion in 2 weeks and supposedly, this will keep Susacs in remission since the drug kills the B cells. My dr. still wants me to do IVIG as long as I can tolerate it (my veins are not very good!) Will keep you posted as to my progress.
Nancy

Hello. I was first diagnosed with MS in 2004, but the diagnosis was changed in July, 2007, when I lost partial vision in my left eye. My hearing changed a couple of years ago. I am a full-time teacher in Cleveland Public Schools, married, with one 8-yr. old daughter. I’m praying that I can continue to lead a “normal” life with my husband & daughter. So far, everything is working out so that I can continue working; just have to keep my head straight without going crazy about all the new stuff with Susac.

I look forward to reading how others are handling this disease, since I feel as though I’m in this alone. I didn’t think that I would find a board that dealt with this!

Hi
I have had Susac since Dec 2001 and was told in Jan. that what I had I lost
my hearing in my right hear in my left ear I have 80% of hearing. My walking
was okay I had a a little unbalance problem but it got worse from not
getting the right exercise program for years. Let me tell you I had it all
IVIG, CEMO, MRI’S. none of it is fun I had to use a walker to walk with b/c
of my balance problem after a year went to a 4 pointer cane then after
anther year went to a one pointer cane. I need to go to a gym to get more
exercising b/c I was going for PT at a Rehab hospital and they said that all
they can due I have to due my home exercises and go to a gym. I can not work
now I had gotten bad my family life was not the greatest it was so neg. . I
was told by Dr. Susac that you neeed to be around more postive people.
I had at the time when it happened a 18 month old and a 2 year old. Now they
are 6 and 8 soon to be 9. They are a handful if it was not for them I would
have given up along time ago,
I live in northern KY.

We can talk if you want to I’m on my Email all the time I due not work I
wish I did. We get ssi the 3 of us because it is a rare disease. I spernd
about 60 hours a week helping at my soms school coping, grading papers,
doing things for the office ect… without pay just Volunteering. I love it.
Got to go get ready for church they are a BIG help in my life.

Linda Hamilton

Dear Marilyn & Blondey:
I am so sorry to hear about your plights with Susacs. I have had 5 major episodes which effected my vision(but according to my dr, it is 20/30), & hearing in one ear. Most of the loss is in the peripherals so I can adjust. Still get bad migraines but not as often as I used to (I’ve had the disease since 2000). I missed a lot of work over the past 8 years, but I did work full time at The NY Times. I left my job this past November and plan on going back to school for my Masters in Teaching in May. I start volunteering at a local elementary school this coming week! I have a great support system-my family has been great! I’ve gained about 40 lbs due to inactivity and steroids but started working out with a trainer and will hopefully lose this extra weight. The weight gain has also effected my liver, so I need to get back in shape. Otherwise, I feel pretty good, and decided that I will not let this disease keep me down!
Nancy

My brother was diagnosed with Susac’s Sydrome a couple months ago at John’s Hopkins. He presented with encephalopathy first, and at his lowest point, he didn’t know the year, date, or where he was, nor did he recognize my mother and I.
(I am his sister). He has recovered pretty dramatically on a regimen of cyclophosphamide (cytoxan), oral prednisone with several IV pulses, and monthly IVIG, but he’s not at the point where he can return to work as a lawyer yet. We went to see Dr Susac in Florida a couple weeks ago to confirm the diagnosis and get his thoughts. Like several of you, he was originally mis-diagnosed with MS, and then the diagnosis became CNS vasculitis until he experienced hearing loss in one ear, which is when they changed it to Susac’s. If anyone is in the Washington DC area and would like to perhaps meet or even chat online, please let me know. This is really hard for everybody involved and any support helps I think. Thank you, Lisa

Wow… not soo alone anymore…

My name is Kris… I was “truly” diagnosed this past year, its been a rollercoaster of treatment since then…

Today… I have no hearing on my left side… and my right… hearing is below the norm… but my comprehension level is sitting at 80 percent for the time being.

I had my last IVIG treatment back Jan. 26th… and tried to stay healthy… seems every time my good ole immune system sends me a cold or any trouble… thats when I start having more hearing trouble.

Anyway… glad/or should I say not so glad to see more people here… but I am glad we have more people to talk to.

Kris

Lisa

It’s me Linda I to went to Dr. Susac He really could not say much he saw my
MRI’S and said I han some lezions on brain and I will get better in time I
just need to keep postive about everything. At the time I and is still the
same my home life is not so good me and my husband fight all the time it
does not help me out at all.

I was taking cytoxan IVIG I hated it took way to long I went to there office
it have it done with all the other people taking CEMO.

Take care of yourself and your brother

Linda

Thank you, everyone, for reading my post! Now I really feel that I can write to someone who understands! I go back to my Rheumatoligist and Neurologist in March. Hopefully, everything stays the same, I guess. I’m still learning!
Marilyn

Dear Marilyn:

No, you aren’t alone! I got some of the most useful info on Susac’s by others who have the disease (200 in the world?) Sure, doctors can tell you what meds to subscribe, but Susacers can tell you how you may feel physically and support you emotionally. I just added some articles to the careplace forum on Susacs- several individual stories, as well as the longest and most thorough study of 90+ cases, and some other general info. Check them out under “resources”

Nancy

My name is Doug - I am the spouse to a Susac Warrior, Kim. She developed symptoms, very similar to the discussion in the previous February thread, last November (2018). She was diagnosed with Susac on December 20, 2018. She was diagnosed with “extreme-severe” symptoms. She has endured hearing loss, diminished eye sight and many lesions to the brain. She has also experienced psychosis on more than one occasion. Her continued battle has been exhausting and I have learned a great deal through the journey. Also, I appreciate the person who brought up Cellcept (mycophenolate mofetil). I will mention this to her neurologist during our next appointment. My sister and I have been in contact with Dr. Egan (Susac clinic in Washington), Dr. Rennebohm, Cleveland Clinic fro Susac, and Dr. Hardy, Sydney Australia Susac Clinic. I heard that there is also studies being conducted in a clinic in southern Florida. I am writing to share but to also learn from others as Susac does not have an “off the shelf” cure. I look forward to future discussions.