Thank you for the very encouraging report. I would never have been able to deal with my condition & ultimately receiving IVIG Therapy. Happy New Year & continued good health to all the RareShare members. Photodonn

Thank you For the Info. I went to Dr. Pecker on Dec. 1st. and got my first IVIG treatment on Dec.3rd, This is the first time in four years that I did not have CLS in a month. I am going for My next treatment Tues. I want to thank you again for letting me know what to do. When I was in the Hospital in New York I met a friend of yours a Doctor, Her first name Alexandria . She was wonderful.

Happy New Year to you all. Very sadden to hear that Dr. Greipp has retired before given the opportunity to meet him. My daughter now 18 continues to have some episodes. Last two episodes 9/11 and 10/11. She's currently taking Theophylline 500mg 4x daily and terbutaline 300 3x daily which seems to lessen her attacks. Still a therapeutic level is unattainable. When do I recommend IVIG to her physician? Recently I have observed her fingers changing colors from red blue then white, when touch she reported that it's very painful. Is this a correlations with CLS Thank you

Dear kbas719: It's very good to hear from you after a year's absence! I really worry about those like you we haven't heard from in a long time. If your daughter is still having episodes despite taking such a huge amount of theophylline and terbutaline, then the time has definitely come to try an IVIG therapy. Patients and doctors all over the world have been reporting mostly excellent results for several years now. I can't tell you whether the change in the color of her fingers is related to her SCLS, but depending on the severity of the drop in blood pressure during each of her episodes, she is at risk of sustaining cumulative and irreversible damage to her vital organs (mainly the brain, heart and kidneys) and/or her arms, fingers, legs and feet. If you haven't done this yet, have your daughter's main doctor make arrangements for her to be examined ASAP by Dr. Druey at NIH. And since you live in New York State, know that there is an excellent doctor in New York City (Dr. Pecker, see his contact details towards the bottom of the Disorder Details section) that she could be referred to for immediate evaluation and likely treatment with IVIG. Write to me at _aporzeca@american.edu_ if I may be of additional assistance.

Please do as Mr. Aporzeca Said and, contact Dr. Pecker . I was on Theophylline for six months and it did lessen the attacks , but after awhile they were more offten. I went to see Dr. Pecker and, he gave me IVIG . Today I an going for a treatment but, I have not had a episode since. The Hospital is across the street from Dr. Peckers office. At Weill Cornell Medical College Division of Nephrology and Hypertension.