How I used the internet to figure out I had a rare disease
Online research helped a columnist receive a Cushing's disease diagnosis
The internet has proven to be one of the most fundamental tools I have utilized while navigating my Cushing’s disease journey.
My body felt off, and I didn’t understand why. In the most traditional fashion, I presented my symptoms to many different doctors, who all brushed me off. This made me realize that I had to figure out what was wrong on my own. No, I do not hold a medical degree. Yet what I do hold is a fierce determination to figure out what was wrong, research skills (thanks, graduate school), and my strong drive to find a solution. The internet allowed me to do that.
How it all began
In 2020, I started developing a multitude of symptoms. The first thing I noticed was that I was gaining weight. My bones ached in a way they never had in the past. My skin was breaking out in cystic acne far more frequently than it did before.
Brain fog became noticeable, and I was experiencing fatigue that never seemed to let up. My legs felt like they had bricks attached to them when I exercised. My anxiety flared randomly, and I would panic about minor inconveniences that happened in my life.
My stomach developed purple marks, and I watched as my face grew rounder by the day. I also noticed a fat pad develop on the base of my neck. I later found out that this was called a buffalo hump. Although these were not all the symptoms I experienced, they were the ones that stood out.
My primary care doctor didn’t seem concerned about all of this, pointing to the nationwide obesity epidemic as a possible cause. I’m not sure if the doctor believed me when I said I was eating 1,700 calories a day and doing five high-intensity interval training workouts a week.
Things just weren’t adding up. I’d never had this much difficulty losing weight in the past.
Turning to the internet for answers
When my symptoms didn’t let up and doctors couldn’t offer answers, I turned to the internet. I went straight to Google and typed, “Reasons for inability to lose weight.” Several responses appeared, but the one that surprised me the most was “Cushing’s disease.” I read more about it online.
At first, I didn’t think it was the cause of all the symptoms I had. But as I continued to read, joined a Cushing’s support group, and saw further disease progression, this idea became much more plausible.
When I finally met with a renowned endocrinologist who specializes in Cushing’s treatment, I felt instantly validated. He listened to me and recognized the symptoms. He believed Cushing’s was what my body was suffering from. After a lot of testing and two MRIs, my biochemical evidence pointed toward Cushing’s. This led me to a neurosurgeon to discuss and receive treatment.
Without the internet, I don’t think I would’ve received a diagnosis and treatment as quickly as I did. In addition to doing hours of research, I also had to act as my own advocate throughout this journey. Having a rare disease can prove to be very difficult at times, but having the right tools to navigate the journey can make it feel more bearable.
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.
Jessica, your story is similar to mine. I used the internet to enter symptoms (hairloss, etc) and finally located Cushings. I realized that I had so many symptoms that I had just chalked up to aging. It took me 7 years to "find" Cushings and I remember being so thrilled to finally have a name for my symptoms. I had successful pituitary surgery in 2015.
Take Care - Sal
Im so happy to hear that, Sal! Success stories are always a joy to hear!