Hi there everyone, I am happy to have found this site. I do not have SCLS however my wife was just diagnosed with it approx. 3 weeks ago from the Mayo in Rochester. That was her second visit since August and she is scheduled for her third visit in December I believe she is going to see Dr. Greipp at that time. A brief history, several years ago, she went to see her GP about her hands and ankles swelling and leg pain they could not figure out what was wrong. They did some tests, nothing. Her legs and arms continued to swell. Well fast forward to April 2010, she woke up sick vomitting and diarrhea. She told me that she was having trouble breathing also. At that point I called 911 and she was admitted to the ER. Hospital had no idea what was wrong, but her swelling improved during her 5 day stay. They think she had some type of an infection. Still trying to figure out what was wrong, one of her doctors referred her to the Mayo, 1st visit one week of testing, doctors are not really sure what is going on. Second visit, 4 days of tests, down to the wire and they determine that she has SCLS by a scan of her brain. Now she has to go back in December for more testing, She is 35 years old. But I think that her ER trip was an attack as everyone has explained. I don't know what to expect I am terribly confused, I cannot go with her to each trip to Minnesota, I just hope and pray that she will be okay. Any advice is welcome! Thank you for listening!

Welcome to the forum. I feel this is the single best resource for information about SCLS available. There are many here that will be happy to answer questions or direct you to where questions can be answered. I've had SCLS since Feb. 2005, have had several low level and more serious attacks. It's a harsh syndrome but as you'll see in the forum there are many of us living with it. Good luck to you, you're wife, and family.

Welcome Nick! Im curious as to what type of scan of the brain your wife had at Mayo that confirmed she had scls? You understandably sound very concerned about your wife. Rest assured your wife is at one of the best facilities in the country, if not the world. If she has scls ,or you think she does, be sure to request Dr. Greipp in hematology at Mayo as he is the world renowned expert in scls. (My experience during my recent 11 day stay at Mayo was that I was randomly assigned doctors in each department that I was run through unless I specifically requested a particular doctor.) Good luck, good health and please keep us posted. Arturo, are you aware of such a test? I.e. a scan of the brain that confirms scls?

No, never heard that any kind of scan confirms a diagnosis of SCLS.

I do not recall the exact scan that determined that she has it. From your response, it doesn't seem likely. Well I hope that is the case. She is going back in December and will be seeing Dr. Greipp also. Additionally, they are going to check her for compartment syndrome too. I know when she is through in December she will have basically completed 3 weeks of testing. I was not at the Mayo for the last visit and the next one due to financial issues. I am hoping that maybe they feel she has symptoms that appear to be SCLS. I apologize that I do not know more about this, according to her records, she has had every test under the sun. I have read many articles on the internet about this. I feel horrible that people have to suffer with this disease. I pray for everyones health and hope they find a cure. I'll keey you posted.

Well today is the big day, my wife is going back to the Mayo for some more testing. Hopefully she will make it there in time for her appointments. She is getting compartment syndrome tests and meeting with Dr. Greipp. Keeping my fingers crossed that they were wrong.

Hello, I am not MD but a SLCS patient and may be this test will be by one of the method to measuring the leak : 1) injection of albumin "radio iodized" 2) Marks Index 3) Landis Test by intraveinous albumin marked by technetium (99m Tc) what measured the radioactivity of the circulate blood by a gamma-camera on both arms like explained in an artcile issued in the french medical litterature :LA PRESSE MEDICALE (June 18,1988 n° 24) "Les syndromes oedémateux par hyperperméabilité capillaire). Maggy

Dear Maggy: A lot more has been published on SCLS in the past 20 years, including by French doctors both in French and in English. If you would like me to send you the survey article "Syndrome de Fuite Capillaire Idiopathique" which was published by Drs. Gousseff and Amoura (l'Hôpital Pitié Salpêtrière, Paris) in 2009, write to me at _aporzeca@american.edu_ and I will send it to you. (It is listed and summarized, together with other even more recent articles, in the Disorder Resources section of this website.) Arturo

hi nick you are doing the right thing in going to the mayo clinic. they will get the diagnosis for you. my brother allen was diagnosed there nine months after his first attack 7 years ago. he takes daily theophyllline and only has had one other attack last year when he reduced his dosage. since his diagnosis he continues to work full time, works out regularly and travels quite a bit including trips to hawaii,costa rica,indonesia,thialand,and several u.s. mainland states. just in case the diagnosis comes back as scls just know there is life after. dr.susan haymons of the mayo clinic gave him the best advice at his diagnosis appointment. she said for him to live his life the same and do what he wants because it took 43 years for his first episode and because it is unpredictable he could have one next week or in 10 years so why wait around. he took that advise and ran with it.. he does take good care of himself and rests when he is tired and beach vacations work well as they are relaxing. he is lucky to have infrequent attacks but when he does they are severe however the theophylline is working for him. good luck to you both linda ps could you be on speaker phone when she meets with dr greipp or maybe he would be willing to have a phone conversation with you as she will need you to be informed if this is her diagnosis