I was introduced to this site by Walt & must thank him for that! THANKS! This is so great to be able to share stories and understanding of what is going on in my life.
I was diagnosed with SCLS in May 2010 after 3 1/2 months of intense testing of every other body system & body function.
This all began in January 2010. I began to feel ill - flu-like symptoms - and my ankles were swelling. My doctor put me on a diuretic to try to reduce the ankles and it did not work. I went back a week later and he increased the dose.
Then in February I went to the ER with abdominal pain. They did bloodwork & found that my platelets were elevated & set me up for a CT scan. After 2 hours of waiting, it was found that I had a cyst on my left ovary that was causing the pain but the swelling was getting worse.
Proceeded to schedule a Hysterectomy with Dr. S. Piver in Buffalo, NY. I have a picture of myself the morning of that surgery and I look like I am about 7 months pregnant!
The surgery was successful & no cancer but I came out of surgery filled with so much fluid in my arms that I couldn't even flex my fingers. The Dr. told us he took a liver biopsy also while he was in there for the uterus removal. Nothing was ever found but the doctor thought it looked a little enlarged.
I stayed at Sisters of Charity Hospital untilthe end of April when they tranfered me to Cleveland Clinic in OH. There they began more poking & proding & testing & yet still had me on an IV. (Not knowing that this was actually making things much worse!) Even with fluid intake restictions for my diet I was gaining more fluid in my abdomen. I still looked pregnent!
Finally in May my Aunt sent an email to my husband about an episode of Mystery Diagnosis that aired about a man from Pittsburgh area with SCLS. The doctors were amazed that I fit the criteria. I felt relief but very confused as to what was to done next.
At the end on May I was tranfered to my local hospital for some physical therapy & regulation of meds. It was wonderful to learn to use the stairs again & walk with a walker at first, then a cane & now no assistance is needed. I was released from there on June 8th and have not had any "serious" problems.
I am currently not on any T & T - just 2 diuretics and prednisone, aspirin, & vitamins. My potassium & protein levels seem to be my main problems. I control them with supplements & diet also.
I am feeling very well now and hope that this continues.