All, I noticed in posts that one person had a severe nose bleed prior to her first SCLS attack. Another patient mentions a history of hemorrhagic fever. Does anyone have a prior or current history of any of the following?: Capillary hemorrhage or capillary oozing of blood Recurrent bruising (slight or more prominent) Low hematocrit or hemoglobin Fragile capillaries Blood transfusion I have been told by two surgeons that I have fragile capillaries. My last surgery on August 12th 2011 resulted in continuous capillary oozing from the peritoneum. This required a blood transfusion post op day 3. I had a drain that continuously filled up with what appeared to be more plasma than blood cells. I guess you could say it was rather diluted appearing. I also required transfusion of magnesium and electrolytes. I had a large swollen abdomen when I went in for surgery but no fluid was found in the abdominal cavity. I realize that capillary bleed is different than capillary leak. I was wondering if anyone else has had this type of problem. My doctors have been puzzled with my case since 2005 when I had a blood pressure collapse. I do not have blood cell or blood clotting problems. All related tests have been normal. Thanks for any input you may have. Bev

Hi Bev, I had a severe bloody nose prior to my 1st attack in 2000. Since then, more attacks, but no more bloody noses .. hmmm dawn fye

For several months about 4 years before my first "attack", I did have recurrent, severe nosebleeds. I remember being late for work because I had to change clothes and thinking "not again". But it was about the same time that - out of nowhere - I started having severe dizziness accompanied by vomiting without nausea and episodic tingling and numbness in my fingers and toes. The first time this happened was worse than the following episodes until they stopped. So I was focused on that and not the nose bleeds. (And the doctors blew it off and I remember not wanting to mention it out of fear they'd think I was nuts.) The dizziness and the nosebleeds just gradually stopped. Carole Thorn

Hi Bev, I often have episodes of extreme bruising for no apparent reason. It almost always happens when I first start getting sick again. I used to be sick for a few months and then better for a few months and the bruising was always a indication that I was going to be sick again for a while. My gums would always bleed a lot also. Not sure if this was related or not, but when I'm not sick they don't bleed and my dentist and Dr.s can't find any other explanation for it. I have had a few minor surgeries, but luckily no major complications. Free fluid had been seen on some of my CT scans, but it was always ignored and nothing done about it. It took me 7 1/2 years to find a Dr. that would take the time to try and find out what was wrong with me. I just got diagnosed in January. Maria Morris

Maria: I find this very interesting. There is so much we do not know about the human body. I have been doing a great deal of research (several hours a day as I am on medical leave currently). It seems like there are some interesting overlaps with other rare conditions. I am putting together an extensive spreadsheet of symptoms directly taken from patient comments. Atypical patients have not been taken into account in the papers published by Mayo. As a matter of fact, if you read closely, they are completely excluded when calculating percentages. For example, it states that 76% have MGUS. However, that is inaccurate when you look at the total number of patients. They are excluding a large percentage of patients that are diagnosed with SCLS but do not meet all criteria. Physicians unfamiliar with SCLS seem to skip right over this fact. I would like to see a paper that concentrates on atypical cases. I believe it warrants a separate category and possibly a study comparing the two. Who is your physician and where are you located? I am working to obtain a definitive diagnosis so that I can approach my insurance for a trail of IViG. I am from Dallas but will travel anywhere. From what I can see, it would be a wasted trip to travel to Mayo North because Dr. Greipp has retired. As I mentioned before, physicians now looking to diagnose SCLS are only looking at typical cases and the Mayo paper on their experience. Thanks, Bev

Hi Maria: I just read your profile .I was wondering if you have ever had your albumin level tested during any of your attacks ? Do you have the mgus? Also how were you able to get your insurance company to cover the IVIG??? Are you still on dexedrine ? Do you take any diuretics? Does the swelling cause the drop in your blood pressure ? Are you also sensitive to heat? Sodium? Does exercise and stress cause you to swell?.Are you sensitive or allergic to several medications?Do you have high bp? Prior to your ivig treatments, did you suffer from chronic generalized edema whereby occasionally it was so severe that it would result in a sudden drop of your blood pressure , extreme swelling , weakness, fatigue, muscle pain, and the other symptoms you described? Or did your chronic swelling always result in low bp?( Sorry about all the questions.)

Sorry again for the big delay in replying. Old computer bit the dust and had to get new one. To answer some of the questions you asked: I am located in Mifflinville, Pa. Very small town. I see my Dr. at Geisinder Medical Center in Danville, Pa. Also a pretty small town, but we have one of the largest hospitals in the area. I see Dr.Rolston there. I am the only patient he has ever seen with this disease and I am pretty sure he consulted with the French Drs. to confirm my diagnosis and decide on my treatment. I don't think anyone ever heard of this disease around here before my diagnosis. I am not sure how the Dr. got my IVIG approved. I just assumed I would have to fight with my health plan to get it approved. He told me not to worry about anything, that was not my job, it was his and he would take care of everything. He did. He is wonderful. He always reminds me this is new to him also and we will figure out everything together and get the answers we need. Stress and hormone fluctuations are my biggest triggers. Exercise just makes them worse. The heat is also big trigger. I hate the summer anymore. Sodium is not good for me but cutting it out of my diet did not help at all either. I am allergic to most of the medication I take. I always seem to get the unusual side effects and almost always a rash. I do not have high BP and yes my blood pressure does drop low, but I have never lost consciousness during an attack. I think my attacks can be severe sometimes, but not even close to what some people go thru. I think that is the difference between the acute form and the chronic form. Diuretics never helped me. They seemed to make things worse so I never take them. I don't think I have MGUS, but not 100% sure. I think this only present in 80% of people. I'll have to ask my Dr. Also, I no longer take the dexedrine. The Dr. weened me off before starting the IVIG. I had a lot of fluid build up during this time. Almost 40lbs. This didn't stop my attacks, but helped with fluid buildup and a lot of the pain in my stomach. My attacks didn't seem as severe when I was on this medicine. My current Dr. didn't feel there was any basis to why this worked and felt it wasn't the best the best thing to be on anyway. I didn't really like taking it either, but it did help a little. I think I answered all of the questions. If not or if you have anymore please let me know. The IVIG has helped tremendously though. I very rarely miss any work and am starting to get back to normal a little bit. I think it will take a while. I still get nervous every time I feel a twinge and think I am going to have another attack. I hope this anxiety will go away in time too. Maria