I am trying to catalog the similarities between the two attacks that I have had. My first attack in Dec. 2011 began with an upper respiratory infection. At 7:00am my muscles, in particular my quads, felt oddly tight. I tried to teach my fitness class that morning but was short of breath and light headed. I went to the ER and all blood levels were normal. They treated me for dehytdration with fluids, causing the later problems, and released me. My muscles in my legs continued to get tighter ( I now know they were filling with fluid). I have described it as feeling like a sumo wrestler. My legs continued to swell on the inside and get harder for me to lift my legs. Another trip to the doctor's that day turned up nothing. By 7:30pm that evening my legs were as hard as granite, but still were not visibly swollen. I could no longer breathe without dificulty and I lost all feeling in my feet. I was taken to the ER at 8:00pm and by 9:00pm I was in surgery for compartment syndrome of both legs. 6 hours later I had surgery on both arms. 24 hrs. later information on SCLS was found and the doctors began treating me correctly. My second attack, two weeks ago Nov 29, 2012, began again with an upper respiratory infection. This time the swelling began in my calves. I woke at 7:00am my chest was tight and my calves were tight. I knew to get my blood drawn and was given an antibiotic for my chest infection. The swelling was visible this time right away. My calves were swollen to the size of my thighs. 5 hours later my blood was drawn again and my Hgb was rising. I was admitted to the hospital and given IVigg and steroids. The leaking lasted 3 days and the recruitment phase lasted 3 days. I came through this attack much better becasue my team of doctors knew more about the disease and what not to do. I would also like to note that I was given a flu shot this year. I had my IVIGG treatment on a Tuesday in September and the Flu shot the next day. 3 days after my flu shot, I woke up with tight muscles in my legs. I went to the ER and had my blood tested. My levels were normal and 6 hours later another blood test showed no change. I was sent home with very tight muscles, but upon waking up the next morning my legs were completely back to normal. I believe I had a SCLS reaction to the flu shot, and luckily I had the right amount of IVIGG in my system to counter a attack. Does everyone present the same each time you have an attack? It seems that I have a pattern of an upper respiratory flu virus that sets my body off. I must also note that I do have an mgus. Not a very high one, but it is there. Thank you in advance for responding. Having just been through another attack, I am trying to piece all the symptoms and signs together.

Actually, you've described a classic, textbook case of SCLS. *Welcome to this very special, one-in-a-million club!* I hope your monthly infusions of IVIG will stop all future such episodes. By the way, several of us have been getting flu shots for years without any harmful effects -- before and after going on an IVIG therapy.

Hello gandcburns, Hello dear Arturo, I have SCLS since May 2003, treated by IVIG since April 2005. I'm regularly vaccinated against flu each year for 30 years, on 2nd half of October. I get my flu shot 1 week BEFORE the IVIG (2g/kg) with the idea of not interfering with therapeutic immunoglobulins. In 2008, unusually, I had my vaccine against flu one week AFTER the IVIG and I had a capillary leak which was quickly corrected with a new infusion of immunoglobulins (1/2 dosis :1 g/kg). Since then, I make sure to get vaccinated one week before the flu shot. I'm not sure the vaccination (or date of vaccination) is involved. But your story above appeals to me. Claude Pfefferlé Switzerland

Before going on IVIG...about 1 month after my first, very life threatening episode, I had a flu shot and seemed to swell up some. I could feel it mostly in my upper body. I drank a lot of fluids and it subsided in a few days. I had some small episodes during that first year that always resolved with rest and fluids. Dr. Druey then recommended going on Theophyiline. A few months following that, I had a routine colonoscopy on a Friday and by Sunday was admitted to the ER, with low BP, swelling etc. They administered fluids sparingly including albumin with recommendations from Dr. Greipp and Dr. Druey(plus support from Arturo). Then they began the IVIG treatments and I have been getting them ever since...(July 2011) and have had no symptoms whatsoever. Just finished up this month's treatment yesterday. The flu shot seems be a trigger for a few of us at least. Since being on IVIG, I have not had any issues with the flu shot or any other trigger for that matter. Good luck to everyone over the Holidays. Marc

My husband has had SCLS attacks after upper respiratory infections, but it hasn't happened consistently. His first (and most serious) attack happened during a very serious respiratory infection (human metapneumovirus). However, he has had less severe infections since (common cold) with no problems. He has had attacks during or soon after the following: - IVIg infusions - bacterial infections in the blood - a surgical implant procedure - suspected food poisoning Other times, there has been no identifiable trigger at all (no virus, no bacterial infection, no wounds). He has had the flu shot for the past three years with no issues, however we've never correlated it to an IVIG infusion. We just can't figure it out.