Hello everyone. I am kind of new to this so bear with me. I am 58 and had my first episode in February of 2016. I was hospitalized with what the doctors thought was Rocky Mountain spotted fever. My entire body was covered in welts and my limbs were swollen. I spent 4 days in the hospital with no definite diagnosis. In April of 2016 I woke up in excruciating pain from head to toe. My sister took me to the hospital ( a different one from the first time). When I checked in I had a normal bp, within a few minutes my bp dropped to 58/40. I ended up in the ICU for 4 days and switched to a regular room for another 3 days. I have some kidney, gall bladder, and spleen damage from these episodes. That has been my only severe attack. I have had several smaller ones since then but I have not been hospitalized again. In August of this year I went to the Mayo Clinic in Rochester. Thanks to a very kind cardiologist, Dr. Lapeyre, he recognized all of my symptoms and with a consultation with Dr. Druey at the NIH, they both "suspect" I have SCLS. They cannot give me a definite diagnosis until I have another attack so my local doctor can run some blood tests. The first few months after my first episode I couldn't sleep for fear of not waking up. I have read so many of your stories and I am so grateful to have found this website. I am not sure if I will ever have another episode or not...that is my problem I guess. Living in limbo, scared of the not knowing. I forgot to mention that I am currently taking monalukast.

I think being in Limbo is the hardest part. I am also taking monalikast and an ace inhibitor. I had been on IVIG but I starting ending up ICU within a week of infusion. Currently, I am still working full-time. I have some kidney damage and minor attacks every two to three weeks. My doctor has provided me with pain killers that I try to avoid unless I just can not muscle through the pain. My health insurance is taking a major hit this year, so I am intending on cutting back on Doctor visits. In reality, they are not doing much besides signing scribs. I can tell when I need to go in, so I am going use my own judgment. I hope all goes well for you. This site is a great resource. Can I ask where you live? I am in Wisconsin.

I am living in Montana. My insurance also took a major hit but they have covered everything so far. I have read many of your posts and wish you nothing but the best. Thankfully I have not had an episode since August when I was put on monalukast.

Did you see my original post? I had Rocky Mountain Spotted Fever.

No, I am sorry I did not see that post Mntnhiker. It sure makes you wonder, doesn't it. I am still episode free, but I am just waiting and wondering when the next one will hit. I find it very hard to plan anything...trips etc.