The Persistent Patient: A Lesson In Taking Back Your Health Care

Jennifer was experiencing incredibly weak and painful muscles and joints. She would feel extremely stiff whenever she would try to stand and was sore all over her body. On top of that she was experiencing constant confusion, dizziness, chronic fatigue, tingling down her legs and arms, burning feet and drastic bowel changes.

She was tested for MS, lupus, diabetes, arthritis and lyme disease multiple times and all test results were inconclusive. In total, Jennifer saw 14 different doctors who incorrectly diagnosed her with Arthritis and Fibromyalgia. At one point, she was on 11 different prescription drugs at once, a combination that caused her to pass out at the wheel of her car, and still, no real diagnosis.

“I was like, ‘Are you kidding me?!  Putting me on all these dangerous drugs!?’” exclaimed Jennifer about her experience with these prescriptions.

Nobody wanted to go further, everyone just kept pushing prescription drugs, which Jennifer started to refuse. She wanted answers, not a bandaid.

While talking to her daughter, a nurse in Colorado, she mentioned how a friend’s mother had used CrowdMed to find a diagnosis when the doctors could not and recommended that Jennifer do the same.

Jennifer submitted her case and with a renewed vigor, was on a quest to find her correct diagnosis

“Right away, I was getting possible diagnosis. I would bring each suggestions I got to the doctor and asked him to check for all of them.”

One Medical Detective suggested genetic testing, which struck a chord with her and she sought out a genetic doctor to conduct the necessary testing.

After two years, her CrowdMed results were proven correct with the confirmed diagnosis of Spinocerebellar Ataxia.

Once she had her answer, it seemed the signs were there all along.

“I had seen so many of these symptoms in my mother who passed away. She would fall all the time and became very weak. All the doctor’s said it was Alzheimer’s and Dementia, and prescribed plenty of drugs and never did any further testing. Looking back even further, I had seen these symptoms also in her father, my grandfather. Again, drugs were prescribed for his symptoms too.”

Spinocerebellar Ataxia is a degenerative, genetic disease that, unfortunately, comes with a remaining life expectancy of 10-20 years.

“This has drastically changed my life, but I try to stay positive. I make the best of everyday. I do as much as I can without hurting myself. One day at a time,” says Jennifer. “CrowdMed kept me upbeat, thinking positive and showed me that you must be your own advocate, I finally have my answers.”

Jennifer goes on to explain that while the end result of the diagnosis is death, it reminds her how important it is, now more than ever, to make the most of every day. Without a diagnosis, she would not have this. 

If you or someone you love is suffering without answers, click here to learn how CrowdMed can help.

*Names have been changed to protect the identity of the patient