Hello to all - I am brand new to the group but not to SCLS. I was originally diagnosed at age 28, at Beth Israel in Boston, MA in Feb 2000. After being administered 30+ liters of fluid I got compartment syndrome and had resulting fasciotomies, many multiple muscle debridements and issues upon issues to try to get back to my former self. I can't tell you how excited I am to see that there is a group for this - for years I only knew of 1 additional person with SCLS and I spoke with him once or twice when still living in Boston. But there was such little information about it I didn't have many places to turn.
Happy to discuss some of my (many) challenges but wanted to jump to today - living in Rochester, NY for a while and have not had a hospitalization in 2.5 years or so, but I have had what I describe as mini-episodes for about a year. I have minor muscle fatigue, heart rate increase a bit, minor swelling - but not really close to requiring a hospital visit. I have been taking 4mg Albuterol 3x/day for about 6 months and it seems to have helped a bit, but does not prevent these recurrences. Has anyone else experienced this? I have not yet done any IV/IG therapy but it's on the table for the future. Any experiences you've had would be welcome.