I am starting this topic on the possible effects of CLS and your vision. I have had several moments where my vision is blurry. This is more noticeable during advanced type leaks. Not sure if CLS has anything to do with my left eye, but I am a candidate for a cornea transplant. My optometrist is trying a Synergyeys contact lens before a transplant. The many capillaries in the eyes could be leaking during a CLS leak. Dr. Greipp and Arturo, please comment if you can.

I've had no unusual temporary or permanent deterioration of my vision during the last more than 4 years of coping with SCLS, and I've read many articles on the illness and found no mention of any damage to the eyes. One of the many puzzles of SCLS is how come the capillaries of our eyes don't leak during the episodes. They are very sensitive -- and visible -- and yet there are no reports of their being affected in any way.

Hi Walt, I wonder if each of us gets affect a little different. I may have developed ishemic cololitis with my last attack. I am waiting for the results of my biopsy. Could lack of oxygen be affecting your eyesight?

Changes in my vision are constant - when I'm really swollen - I will see double momentarily at times. I absolutely can connect these changes and my overall fluid retention. It is most noticeable to me when I try to read. It may not be direct leakage of the capillaries in the "white part" of the eye - which would be seemingly easy for even an observer to detect. More likely to me it seems that a generalized increase in intra-cranial pressure could easily impact vision. I believe that much of the leaked fluid collects in tissues lining any organ and in connective tissues and that congestion could "mimic" so many different conditions. (I'm just throwing it out there - I don't know if it makes sense)

My opthamogist and optometrist both checked my eyes with advanced equipment. They didn't find anything outstanding in the capillaries, but they said they were aware of leaking capillaries in eyes. I gave them literature and reports on CLS. They both agree that leaks would affect the eyes. But like my blood, it looks good until I have a leak. So hopefully AI never leak again but will have them check the eyes while leaking.

My vision changes when I get swollen - I have been sent for further hospital test twice now for glaucoma - but both times I am told no glaucoma but my left eye has problems relating to the cornea that doctors cant be sure about. I now have to make sure of regular eye checkups. I have told the doctors abour the SCLS but no one seems to know anything about it

My vision also is blurred at times of swelling. i believe when you are experiencing fluid retention this is normal. I believe edema does affect the eyes. As soon as i get some of the fluid off of me, my vision returns to normal.

I also experience blurred vision when I am VERY swollen .( I am always swollen).I went to my eye lDr. and he said the pressure in my eyes had increased and I was a" suspect" for developing glaucoma and therefore need to have field tests done annually.I don't know if this is related but thought I would mention it.

I had three severe attacks last December. The last one was on Christmas morning, taken to hsp by ambulance, almost died in route, received my liquid gold, IVIG for three days, came home New Years Day!! I could not understand why my eyes hurt, I went to eye dr. He said that it looked like I had leaking of capillaries in my eyes, and that it had all happened at same time and that some were already stopping on there own. I returned one month later to compare with last picture of eyes and they had all completely stopped leaking. Interesting, he had never seen anything quite like it. I am still holding my own, not at full speed, like maire and susan I have episodes of swelling, extreme fatigue!!! It is a life altering syndrome. I do not have severe enough episodes every month to do the IVIG maintenance. The Mayo Clinic diagnosed me in December 2004, my first attack that sent me into ICU was Oct. 2004, they sent me home like a swollen monster!!! I could not move!!! My husband had to do everything for me until some of the swelling went down. I barely made it to the hosp on time. BP dropped to 50/30 and I went into seizure and shock, throwing up, my husband said something like black tar, everything collasped and they put main lead in my chest. They were running every test possibe, and still said we do not know, must be viral!!?? Famous last words when they do not know. I told my husband when I can travel I must go to Mayo and see if they can diagnose me, because I felt I would not survive another. I have been to NIH. awesome, Dr. Druey and Dr Greipp are amazing!!! I pray one day we will all see a cure!!!:} Until then, thank you all for your input, hard work, and dedication regarding SCLS. Stay well and may God Bless

Maryjane, i just wanted to say.., you are not alone. This is, as you said, a life-altering syndrome. My battle over the last two and a half years has changed my life and my family's life. I also struggle with fatigue. This month i started a regular cardio class to lose the extra weight put on since last Feb.(a total of 30lbs since my first episode) and help with my depression. I have started seeing a very compassionate counselor, who is very interested in this rare disorder we all have. This step, which was very hard for me to take, has truly been a blessing. She is helping me to recognize the main source of my depression: the loss of my life as it once was. It is easy for others to say, "you need to make the best life out of what you do have". And i know that in my head, but i don't feel this in my heart or with my emotions. Everything i do, i find myself comparing to what i once was able to do, and there comes the grieving.. Much like grief that you experience with the loss of a loved one. A lot of anger and sadness, that can mount up inside of you. I am now on my way of learning to modify my life and my way of thinking and to accept this change. I know it will not happen overnight. Just like a death, it takes time to come to a place of the loss no longer engulfing you in emotions. I have a strong faith in God but, i did not know how to practically cope with my loss on a daily basis. I have hope today, that i didn't have three weeks ago. The hope that i can live a life of joy instead of sorrow of what once was.. Hang in there, Maryjane! and everyone else too! Warning to readers: I know most of my comments can run a little on the "feely" side and less analytical, but for me I have learned it is key that we all need both. Support.Support.Support.

Excellent post, Marilyn! Very well said.