- CASE FILE
I've been diagnosed with Soto syndrome, Gorlin Goltz/Basal Cell Nevus syndrome, and PCOS have never been put on treatment by PCP or Endo
ABOUT THIS CASE FILE
My case should be one for the books. I sometimes wonder how I am still alive at almost 39 years old. At 16 months old I was diagnosed with Soto syndrome which is the opposite of dwarfism its gaintism which caused me to grow very fast to 6'1 1/2 inches tall, big bone structure, big hands and feet, and multiple other problems. In my early teens I was diagnosed with PCOS or Insulin resistance which has caused me horrible weight gain to the effects of I am 400 lbs now and it seems almost impossible to take it off, Hirsutism with excessive hair growth on my face, very heavy menstral cycles up until I had my IUD inserted and I am on my 2nd one, and many other complications. With insulin resistance my body produces insulin but then resist it so it stays in my stomach and turns to sugar wgich turns into fat, which is why all my weight is in my mid section. At 18 years old I was diagnosed with Gorlin Goltz syndrome where my body will over produce cycst. I had 3 cycst growing in my upper and lower jaws and caused me to have 10 teeth removed at the age of 18. The surgery was done at Shands in Gainesville, FL by Dr. Green who was one of the only physicians to work with a case like mine in the GA/FL area and thats why I was referred to him. A few years later I was diagnosed with Basal Cell Nevus syndrome which makes me a human target for skin cancers. I have had both basal cell and squamous cell cancers removed from all over my body. I have had several removed from my head and face that have caused scars and disformation to my face and ears. I had a squamous cell removed from my female area a few years ago that went into a deeper layer of the skin so my doctor referred me to a gynecological oncologist. I had to end up getting my sentinel lymph nodes removed from the left and right side of my groin area. The lymph nodes came back negative for cancer which was a positive. After getting the 2 lymph nodes removed I developed lymphedema in both my legs which effects my day to day activities to this day. What blows my mind is that I have never been put on any kind of treatment by doctors to help control any of my medical issues. Me and my mother did some research on Google when I was 18 when the internet first came out and found out if I really did have Soto syndrome there was a medication I could have taken from the time i was diagnosed till puberty or until I was 18 yrs old to help control the symptoms that come with having this syndrome. I have been to doctor after doctor, Endocrinologist after Endocrinologist and feel like I never get any answers on what exactly is wrong with me and what treatments are available to be that may help me live a better quality of life. That is what made me want to come here and tell my story to possibly get the help and attention I have needed all along and finally get some answers!!!