Hi everyone- During all 5 episodes I've had I have never experienced edema. I swell only after IV fluids are administered, & that goes away within a week or so afterward. Has anyone else found that to be their experience? My immunologist at U of Colorado Hospital is checking out other possibilities (14 vials of blood taken), an exercise stress test, etc. before making a final determination on SCLS an IVIG treatment. Thank you for any inputs on swelling. Ann

Hi Ann. There have been a couple of times that my husband has seen swelling as an indicator of an episode, but it's very subtle and hard to spot (sometimes in the legs, feet & neck, and once around the eyes). However, for most of my husband's episodes he gets very little to no swelling until after IV fluids are administered. He does not experience any bouts or periods of chronic swelling as a precurser. Instead, my husband experiences these precurser symptoms that vary depending how far the episode has progressed: dizziness, nausea, vomitting, elevated heart rate, fatigue and shortness of breath. Most symptoms put us on alert to start monitoring his blood, but as soon as he gets the elevated heart rate and/or shortness of breath, we head to the ER with our documents (and we alert our specialist that we are having an episode as he often advocates for us in the ER).

We also run to the ER if he shows any signs of dehydration, and of course, if his blood tests show elevated hemoglobin.

Thanks so much Lieza. Your husband's symptoms sound so much the same as mine, although he has endured so much more than I have. I sure hope he is doing well at this time! Ann

Ann, I have suffered 6 episodes the last being in Dec. 2010 (I am now receiving IVIG therapy) and did not experience any swelling from the SCLS, but like you it occured while on IV fluids. I started IVIG in April of 2011 and have not experienced any SCLS related symptoms. ...Donn

Hi Donn, Thank you for your reply. That's wonderful that you're doing so well on IVIG. Have you experienced headaches or any other negative affects from IVIG. Also, what rate or amount are you on? The last episode I had was April 21, 2012. My immunologist has been communicating with Dr. Druey at NIH about my case. He's ruling out all other possibilities before getting me onto IVIG. It's all taking so long because my husband recently had to have bypass surgery, so my pursuit got a little delayed. I am thankful that I haven't had another episode during this time while my husband has been recuperating, however, I have had some days where I have little or no energy. I've wondered if that is due to SCLS, but it didn't progress to a full episode. Ann

I often describe it to my kids ....my muscles feel like I have run a marathon and in actuality have only walked across the room and that is NO exaggeration ....right down to the beads of sweat running down the back of my head n body. Limited exercise (as tolerated) is essential I believe, my left arm was paralyzed when I was first discharged. Have found swimming and treadmill to be the most beneficial for me. As for swelling some days feel very puffy even the inside of ears n throat feel swollen with intense episodes. Bottoms of feet hurt to walk, hurts to kneel, my rings don't fit some days, but the worst lately is the abdominal bloating. Have read stress can be a precursor however for me severe pain seems to be a trigger that I have noticed. I have an entrapped nerve in my right pelvis/leg. Know it sounds weird but comedy shows help my pain more then any Rx's have. Have measured a 2 to 4cm soft tissue thickness increase during episodes with a 3 to 7lbs daily weight gain noted as well with intense episodes. Have gained 83lbs since this all began two yrs ago. Hope this helped some.