Hello everyone, I am Valeria and I'm from Spain. I was living in Miami for work until a month ago when I had several attacks and no Doctor was able to diagnose my condition. An endochrinologist I saw suggested I had SCLS and seeing the lack of interest of my PCP and doctors I saw every time I went to the ER, I decided to return home where I have been diagnosed with SCLS. I will not be able to return due to my work visa but I am positive I will be able to start treatment once the more detailed analysis are taken next week. May I please ask the treatment you are currently receiving please? I am willing to visit hospitals with the most SCLS cases treated. Thank you and I wish All a year free of attacks! Sincerely, Valeria.

Welcome to our community, Valeria! My advice to you is as follows. *First*, you should have your SCLS diagnosis confirmed by an expert, and the best way to go about doing that is to have your treating physician send in ASAP a copy of your medical records to Dr. Kirk Druey at NIH (see contact information at the bottom of the tab “Disorder Details”) requesting an expert evaluation. *And second*, if and when your diagnosis of SCLS is confirmed, then Dr. Druey will work with your physician on a treatment plan which may well include an IVIG-based therapy. You can read all about it in the various sections of our website. Fortunately, there is some knowledge about SCLS in Spain's medical community. Physicians from Barcelona, Bilbao, Córdoba, Coruña and Valladolid have published case reports on SCLS in recent years, so let us know where you are living in case one of them can see you. And if you'd like to read these reports in order to have the names of doctors and hospitals that have seen cases of SCLS before, or to give them to your physician, send me an email at _aporzeca@american.edu_ and I will email them to you. We also have a couple of community members who are in Spain, and they may be able to help you. *Please do not delay:* if you really have SCLS, then it’s only a question of when, not if, you will experience your next episode — and it could be fatal. Arturo

Hi Arturo! Thank you very much! I live in Barcelona city, hence I greatly appreciate the information about doctors who have treated this condition. My internal medicine expert, Miquel Vilardell, he is a professor and also chief of IM in two renowned hospitals here in Barcelona, has programmed the analysis to comfirm and prove I have SCLS, May you please advise which are the main tests to be completed this way I am able to compare with everything he requested in the labs? I am having those tests done on Jan 10th. By the other hand, he saw my analysis when I was in the hospital and the generalized and cyclic edema and my constant cold hands are the symptoms I have now along with a severe hormonal disorder caused by secondary hiperaldosteronism and high renin, which was caused by the severe hipovolemia. The renin/aldosterone ratio is normal. I also experience tingling in my back, feet and hands, and also amenorrhea. I am not able to sweat anymore either. I am currently taking 150mg of spironolactone daily, in order to control the aldosterone effects hence the generalized edema as well. Did you have hiperaldosteronism? I had 2.2 albumin in the hospital and the ESR was 40, the CRP was 30. I had low pressure as well which returned to normal right after the attack. I had a couple of mild attacks in which my pressure was not as low as in the first, the strongest attack. It started with sinusitis and liquid diarrhea, a whole day with fever, which stopped in the worst couple of days in which the albumin got so low. I have been feeling extremely weak since the attack, which impedes me to work out in the gym or run. 8 months earlier, I had an herpetic queratitis in my right cornea back in April for which I am taking 800mg of acyclovir for a year until April 2017,. I was treated in Bascom Palmer Eye Institute. I did not have anasarca or fluid in my lungs or heart. My kidneys are fine and liver as well. On Jan 9th I am scheduled for a kidney doppler ecography to see the veins. My BNP rised to 643 in the hospital - being 300 the max normal- and a d-dimer indicative was also high with negative result at a CT scan, my heart is in good condition as well. I do appreciate to receive the info you mentioned in my email: manfredivaleria@gmail.com Thank you so much! I will wait to have all the results by Jan 19th in order to contact the doctor you mentioned. Sincerely, Valeria