Sometime this year in July of 2016, I was diagnosed with SMA syndrome. After about 9 months to a year, or possibly longer, I finally had enough of feeling so sick and nauseated from the time I woke up til the time I went to sleep, vomiting here and there, dry heaving more than vomiting, and experiencing rapid weight loss.
I had been to my primary doctor, who referred me to a GI. I had lots of tests, from H. pylori and CT scans, to endoscopy and colposcopy, to a celiac test and a whole lot more. Nothing was found, but I just kept getting sicker and more frustrated that the GI found nothing. Every time I talked to my primary doctor, she just went with whatever the GI said.
I started to just make myself comfortable, eating what I could to keep my energy up. I went from trying a liquid diet to sometimes not eating at all. The pain was unbearable, eating or not eating.
In June 2016, I collapsed at work. I couldn’t take it anymore. I was so sick and weak, I had be rushed to the hospital. I was admitted for a couple days under observation. The doctor again said nothing and was ready to send me home. I couldn’t take it. I fired the ER doctor and they gave me another one. This doctor looked into me. He took his time and ran a lot more tests. He ruled out everything and diagnosed me with SMA syndrome. Well, I thought because I got my diagnosis, I could finally get the help I need. The ER doctor sent me back to my primary, and I saw a surgeon immediately. That’s where everything went south.
The surgeon wanted to run more tests because, when he looked at my x-rays and other tests, he felt it wasn’t right. Three months later, all because I left that ER doctor, I am in pain with no help because my GI, surgeon AND primary doctor either don’t believe or don’t know what they are dealing with.
I don’t know what to do. I’m so sick. I’m 28-years-old and have always been small-built, only weighing in at 120 lbs since I’ve been an adult. Now I’m down to 96 lbs and still dropping. I really don’t know what to do. The ER doctor that diagnosed me referred me to UCI Irvine or Cedar Sinai, but also back to my doctor. I’m lost on what to do. I’m so scared I’m gonna die. Can someone help point me in the right direction please? I’m loosing hope and wondering if my doctor and GI, or my surgeon and doctor are right, and the ER doctor isn’t.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.