Hello everyone, I am so glad to have found this support group. Unfortunately my husband has been recently diagnosed with SCLS & we have been told that he is case 153. He is a physician & went to work on Jan 29 & collapsed at work. He was in the ICU for 9 days & had faciotomies on all 4 limbs. Then he spent a month in the burn ICU. he has just been transferred to a rehab hospital. He has a lot of pain & nerve & muscle damage & has to learn to walk all over again. This syndrome seems very scary to me as I realize that one can get repeated episodes. We r in contact with the NIH & Dr. Druey. My husband has already had 2 monthly treatments of IVIG. Wishing u all the best. Nayab Ahmed

Nayab, Welcome to our virtual community! While what you and your husband have just gone through is horrible, and the road to full physical rehabilitation could be long and hard, it may well be that the worst is over for the two of you. After all, your husband survived his first episode, which is the greatest achievement; he received a (presumably correct) exceedingly rare diagnosis; he had the surgery he needed to prevent even worse damage to his muscles and nerves; and he is already receiving what is probably the gold standard in the prevention of future episodes, namely, infusions of IVIG. Trust me, many of us have had it much worse. Just read some of our profiles and you will see. Incidentally, I see that you live in Indiana. If you happen to be close to Indianapolis, there are two critical-care doctors there I can recommend who know a thing or two about SCLS. If you want a referral to them, write to me at _aporzeca@american.edu._ Arturo

Welcome Nayab. I'm sorry to hear of your husband's diagnosis. His recent episode sounds like my husband's first episode in 2009. My husband also had to relearn walking. I am glad you found us.

Dear Nayab, I am glad you have found this group. It is what carried me through the scariest time of "unknown" when I was diagnosed. Arturo is a wealth of information, and we are fortunate as a group to have him be a voice for us. I went through the same attack as your husband and also went through extensive rehab. I had one other attack, but was not taking the correct amount of Ivigg. The good news is that since taking IVigg monthly, I have not had any more. One year strong, and I even escaped an attack during flu season with my children. I hope that Ivigg will be as effective, which for most on this site it is, for your husband. Our thoughts and concern are with you. Cristina

Thank you for your wishes & support. Arturo I am really grateful for all your hard work & advocacy for this disease. We were very lucky that the icu docs were able to contact NIH & confirm the diagnosis in only 2 days. I will get in touch with u about the names of the icu docs in indiana. I already read many of your profiles trying to figure out this disease. My Wishes go out to all of u. This is so difficult & stressful & that is why I came here to find support & information. I am worried once my husband comes home, how will future episodes be handled. If one is alone & the attack starts, does the person have enough time to call for help before passing out? Full of concern & worries, Nayab

Nayab, Staying up with this group and making some contacts here, was and is very helpful for me. It continues to be helpful 3.5 years after my diagnosis. The IVIG has been a lifesaver, and has also helped through the mental/emotional aspects as well. There is a 'new normal' that you and your husband will need to work through. Please don't disregard the mental/emotional aspect. I suffered from some post-traumatic stress following my epsiode and had to seek counseling. I had never felt comfortable with counseling, but endured it as well. It was almost like I had to go through a 'greiving' type of process due to the loss of my 'old self and past life'. It can be done though! Prior to the IVIG, I had my initial episode that I almost did not survive(the ICU doctor told me at my release that no one there thought I was going to live through it....but was released in 6 days and was fortunate to not have to go through fasciotomies ...although it was close) then I had some smaller self correcting episodes in the following months and then 9 months after my initial episode, landed back in the ICU. That second hospitalization was much less traumatic as we knew what was happening and convinced the doctors to manage the fluids, use Albumin vs just Saline and then IVIG started monthly from there. I have not experienced a symptom since starting IVIG. That is not always the case, I understand, but far and away, most are having very good outcomes when on monthly, full dose IVIG. I am on Ocatagam, but originally started with Privigen. In regards to your questions: It sounds like your husband is a physician which I am sure will work in his favor. - After my diagnosis, I spent a considerable amount of time networking and educating the Doctors that treated me while in the hospital, just in case I ended up there again. They had not heard of SCLS until I showed them some of the papers and the written diagnosis from Dr. Greipp at the Mayo Clinic. I now have two doctors - a Personal Physician and an Oncologist/Hematologist that I see on a regular basis. Both can advocate for me. I carry information with me at all times on my condition and who to contact in case of emergency. I also wear a Medic Alert Bracelet indicating I have this condition. In regards to passing out - I did not have that rapid type of episode. It would come on over the course of a day or two and my blood pressure slowly dropped. But I understand the concern and was worried about that as well. Others have had the situation where there was not much warning, so maybe they can convey some options for you on that. The IVIG should help to avoid that., but until you have more experience, there may be others to help recommend steps that can be taken. I wish you and your husband well and can continue to send information or recommendatiosn if you wish. Barney