Would everyone please state their history in brief form in this topic. We can use this topic for review of all of us quickly. If you are family member of those who have passed, please also provide information. Brief would be as follows: Walt -- CLS 1st 2/05 - not diagnosed, no idea of cause. 2 episode 12/07 and 3/08 , diagnosed 12/07. Additional ER visits 12 times to date. Bethel Park, Pa. This is great with responses. Please edit your comments and add city, state.

I think that this is a great idea. It seems that there are new people every day joining this blog. It will be nice to collect info Judy- SCLS for 5 or 5 1/2 years (3/04 or 8/04) 4 or 9 months undiagnosed 4 years 9 months diagnosed I leak every 5th day for the past 4 years I take 10mg singulair every evening to treat my SCLS I just tried zocor to treat SCLS for 5 1/2 months-the 1st 2 1/2 months were great-very mild leaks but the past few months I have had more severe attacks. I live in Lutherville, Maryland (Baltimore suburb)

Claude - SCLS for 6 1/2 years (first shock 05.04.2003) Diagnosed during the first shock (05.07.2003) 6th shock on 01.01.2005 Since IvIg treatment instaured on 04.11.2005 no new shock.

Glenn's History first major leak 2/03 several other hospitalized leaks diagnosed 9/05 during a major leak died 3/06

Dan's history - SCLS since March 2005. First attack March 2005 while undiagnosed. Second attack January 2007. Diagnosed April 2007. Third attack February 2008. Several minor attacks that did not require hospitalization.

Ruth's history - SCLS first diagnosed October 2005. 4 Small undiagnosed attacks prior to my major acute attack? No other acute attacks however I suspect small attacks may be occurring as I suffer from regular bouts of swelling in my legs. On no medication for SCLS. Second acute attack September 2009 and third attack December 2009.

J'ai eu une première crise, non sévère en octobre 2004. ensuite crise sévère en Mars 2006 avec diagnostique ensuite aucune crise jusqu'en Janvier 2008 de Janvier 2008 à Août 2008 hospitalisation presqu'à tous les semaines. De Janvier 2008 à aujourd'hui... Traitement d'immunoglobuline mensuel sans aucune rechute.

Robert-First attack in 1989. Four additional attacks all requring hospitalization. Last incident July 2008. Diagnosed with SCLS in November 2008. Medications-Terbutaline and Theophylline.

Jeff-first attack Valentines day 2005 (the ER is very romantic). Diagnosed at that time. No attacks or warning previous. Several ER visits since.

Allen - 5 + years with CLS, first episode in Nov. 2003, was diagnosed in Aug. 2004 at Mayo Clinic, Rochester. Second episode Sep. 2009 though milder, recovery in 5 - 7 days. No other episodes. Take theophylline and missed a few doses prior to last episode.

Denise - Attacks January 2008 (severe), June 2008, July 2008. Treated for breast cancer 7/2008 to 11/2008 - no attacks during treatment. Attacks resumed weekly from 3/2009 to 4/2009. Diagnosed with CLS in 4/2009. Take theophylline and terbutaline. No hospitalizations since.

Nolan- First attack June 2007, Diagnosed January 2007. Has frequent attacks every 5-6 days with periods of remission for a few months after major attacks. Has been on theophylline and terbtaline but they did not control attacks.Has had 30 ICU hospitalizations and 5 life flights to a major hospital in Utah. He is on IVIG. Has had 2 doses. No attack since the start of IVIG July 2009. Lives in Burley, Idaho

Kim April 2007 - symptoms began (swelling started in ankles, moved up body like filling a cup over 6-8 months) February 2008 -pericardial window (water around my heart), 10 days in ICU & passed out during that stay May 2008 - diagnosed, tried terbutaline & theophylline, did not work, tho may not have been monitored correctly I swell constantly, am maintaining now on diuretics. Approximately 10 ER visits, sometimes for dehydration, sometimes for swelling, admitted 3-4 times May 2009 - at Mayo Clinic,discovered heart problem, thickness of the muscle, not sure if related to SCLS, but also auto-immune. Holding off on restarting terb & theo for SCLS until heart issue under better control. Tried lisinipril for heart, no results, am starting rituximab next week. Going to NIH for the study Oct 19th. I live in Buckfield, Maine

Hi I'm Jill from the UK, I'm 49 I cant remember exactly when I first had an episode of SCL as I have suffered with it as a chronic condition for some time now without realising what was happening. I have never been hospitalised with it although I have had a few episodes where I have collapsed with dehydration due to the shock. The worst events seem to happen over a few days then it takes my body a couple of weeks to regain its balance again. It was a couple of years back when a very frustrated GP agreed to send me to the local hospital to see a professor of immunology to see if it was some sort of allergy attack I was having - I described my symptoms and he suggested it was not an allergy but indeed SCLS. At the same time I being so frustrated with the situation which was now really making life more than difficult I decided to also play detective myself. I had blood tests at a local allergy clinic who diagnosed severe intolerance to Dairy protein and soya protein. This caused a reaction and a build up of the immunoglobulin G in my body As I was going through the diagnoses with the immunologist (Set of 3 blood tests one as control, one each in the two different stages of an episode - swelling stage and then as my body got rid of the fluid a couple of days later, testing for osmoality of my blood) with my immunologist I also stopped eating dairy and soya protein completely. I had up to that point been experiencing episodes approximately every 2 months at that point of varying degrees After I stopped eating dairy protein of any kind (very strict on label reading etc) I had no more episodes and did not therefore complet my blood tests with the immunologist. I todl him of my discovery and all he said was that there was no proof that dairy product had any link. Anyway I had no more episodes at all until this last week when I had one that laid me out for a few days - I'm now recovering. I know the reason for this is that I had become complacent and after a very bad upset last year I have not had the motivation to watch what i eat - I have been eating dairy products increasingly over the last 10 months and this is where I now find myself. I have learnt that if I take an antihistamine at the onset of an episode (when I feel the tingling and the sweelign begins) then the episode is not so bad. I have also used acupunture and chiropractic and massage as physical therapies in order to deal with the trapped fluid and painful joints etc all to good effect. I feel this is a condition that is created by something we do to ourselves and drugs to limit it are not the cure. I also feel this is very much linked to the Immunoglobuliin G response in our blood.

My name is Aaron,38 from Michigan Both my attacks were 24hours after eating steak,and after reading some stories on here I also used protien shakes(1 to 2yrs prior)and I worked out alot.I also had upper risp. infections. !st)attack Oct 07 passed out while hunting,went to the er and they passed it off as nothing.Later that night went down 3 more time,was taken to th ER again,spent 4 days in the hospital and I was fine(undiagnosed)I did have some tightness in my legs. 2nd)Jan 09 Got dizzy a couple of times,at a doctors visit for upper risp infection,later that night almost went down.Went to the ER,the next thing i remember it 3 weeks later super bowl was over,my little one turned seven ,I was minus a leg and i could not move my hands.I spent 3 weeks in a induced coma,100's of tests,but they said i had scls.I swelled to 367lbs(norm is 195lbs)I have a drop foot on my right leg.55 days in the hospital,20 weeks of thearpy.I have learned how to walk again,with my fake leg,Had a operation to fix the nerve damage in my right hand(tendon transfer,nerve licies).Other then that I'm doing great,I feel great. I am taking theo 4 times daily/trying to get to 5.I went to see Dr.G at the Mayo Clinic,He was great.Gave me tons of good info.He also found out about a protien in my body that should be there for a person with scls,but for whatever reason it was nolonger present(good thing)(maybe Dr.G can chime in on this subject,i just thought it was good). My doctor here taking care of my scls still says it not present.as of Aug.I go and see her again on Oct 21.It's been hard for me to come on here and share my story,because I try not to think about my illness,I live my life like there is nothing wrong with me,that's just how i cope.Thanks

My name is Mary Jane. I am 55 and from Plainfield, In My first attack was October 2004. In ICU for 3 days. Pressure dropped to 50/30 went into septic shock and seizure. After 40 liter of fluid and steroids and looking like a monster I was released. I could not use any of my body. My husband was my hands and everything. All they could tell me is that I had a virus!!! Not acceptable. When well enough to travel I went to Mayo Clinic to see if I could get a diagnosis. Yes!!! I am not crazy, it is called SCLS. I am on meds of 900 mg Theo24 and 25 mg terbutaline every day. 5 years thought I was doing ok and then this past Sunday. Second episode, high 104 fever, like flu, extremely tired, sick at stomach, pressures declining. Passed out at home hit head on concrete tile, husband called 911. Taken back to same hospital as 5 years ago, but this time I had power. Knowledge of my disease was so powerful in my care. I had already retained a doctor here so they started the fluid and steroids, etc. I just came home yesterday, still very tired but very blessed to be here. I knew something good would come out of this episode, I found all of you!! Did not know how to find anyone. I pray for a cure and have been for five years!!! God bless, continue to pray for a cure. I was so excited about finding and speaking to Walt. I pray we all find the answers we are looking for.

Why did they confuse your attack with being septic...

This is about Connor my four year old son. 1st attack- March 2009 no diagnosis and no reasons 2nd attack- December 2009 diagnosis and just came home after 10 days in hospital including ICU Just want to know what to do to help my son the most.

Forgot to post that we in Danielson, CT

My first attack was early January 2008. It began with flu like symptoms, muscle fatigue, nausea and then throwing up when in upright position. Blood pressure very low, husband brought me to er, where i waited 13 hours to be seen by a doctor. I was admitted to a room on the floor, but when nurses couldn't find my bp, i was moved to icu. Blood pressure extremely low, heart rate terribly high. I was hooked up to fluid, then dopamine injections. During the three most critical days, i had put in 60 pounds of fluid. i spent 2 weeks in icu, 1 week on the cardiac unit, and another week in physical rehab unit. They tested me for many diseases: west nile, etc. I had a spinal tap, a bone marrow, and so forth. Their only answer was that i had septic shock from some unknown disease. A one time incident never to happen again. That Thanksgiving, i had flu like symptoms, swelling in the belly area, muscle fatigue. i happened to be suffering with my neck(disc fusion), so i had been placed on a prednisone pack. Apparently this thwarted the scls episode. It wasn't until Dec. 28, 2008 i had another full blown attack. This time my sister who is a doctor began scrambling for information, and remembered an article written by Dr. Greippe. She then worked with my physician on how to treat the episode. This time my hospital stay was 2 weeks and 40 pounds of fluid. We then went on in Jan. 2009 to see Dr. Greippe in MN to be properly diagnosed and to obtain a program. In Feb. 2009, another episode- But, with Dr. Greippe's plan we reduced my stay to 2 days in icu, and 2 days in cardiac unit. This time my fluid gain was 20 pounds. Initially after my visit with Dr. Greippe i did take terbutaline and theophylline, but after 6-8 months of constant anxiety and depression, my husband supported my decision to stop these two medications. During this stretch of time i had not left my bedroom or home. It was crazy. The only change in all my meds were these two. It was a risk to take, but i had become suicidal in my thoughts. It wasn't until last week during a checkup with my doctor that we came to the conclusion, i have been having small scls episodes one to two times a month. I swell terribly in the belly area, feet hurt from fluid, thirsty, pretty miserable for about three days. (all this time i thought maybe my diet or meds were the reason). Bp does not drop below 120/70, though. So until now i have just wallowed through it, until it passes. I had one last weekend, and as of today i have swelling again in the abdominal area, feet hurting. Are there any practical suggestions during these smaller episodes that could be of some help? i do push the fluids and keep an eye on urine outtake( since this was something that stopped altogether during the full-blown episodes)? Any info would be of help. I am a 45year-old mom of 7 children, from Lake Charles, LA.

Oh, this was a little extra something. Each episode, i have terrible pain in the cervical area(c3 is fused) prior to the big episodes. My last er visit, the pulmonary doctor who set up my central line noted i had severe swelling in my throat area. hmph! Isn't that interesting?

Dear Maire602: I'm no doctor, but I think that since you cannot tolerate the traditional medications and you are having frequent episodes, you are an excellent candidate to be given monthly infusions of IVIG, a medication which, as you will see in various places in this site, has been tried with great success in Canada and Europe -- and is now being tried here in the United States by several members of this virtual community, including by myself, with excellent results so far. The problem is that IVIG is extremely expensive, so you'll have to come up with a plan with your doctors and they with Dr. Greipp. Usually, they give you the first infusions whenever you are hospitalized, then try to get approval from your insurance to have you receive IVIG on a regular monthly schedule, on an out-patient basis. The side effects are usually minimal or, in my case, non-existent.

I'm going to start IVIG treatments next week. I just received notice. I had a serious attack starting Christmas day that forced a bowel resection and a 3 week stay in an ICU 300 miles from home. God I hope this works.

Arturro, In response to your suggestion of IVIG treatments, my brother-in-law, a critical care pulmonologist, was against this idea initially. Mainly, i think he was concerned about possibly triggering an auto immune disorder. But,I think i will inquire with him about this again and see if he's done more research on this treatment. Of course at the time, i was having only full blown episodes here and there, but now that i'm having these smaller consistent ones, he may have changed his stance on this. Any latest developments on this method would greatly be appreciated. Please email me, at maire602@aol.com, with the info and i can forward it to him. I know everyone has to choose the best treatment according to their level of severity of SCLS and other issues that factor in to each individual's plan. And i appreciate any advice you can offer to each of us. sincerely, marilyn meaux