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

Patient “Jennifer” was sick of it, just sick of being sick all the time. She had been from doctor to doctor, gone through several tests and prescription drugs. At one point, she was on 11 drugs at once and passed 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. Needless to say, she went off all of them and started looking elsewhere for answers.

“Jennifer” was experiencing incredibly weak and painful muscles and joints. She would experience extreme stiffness when rising out of a bed or chair and generally very sore all over her body and on top of that, confusion (brain fog), dizziness, chronic fatigue, tingling down her legs and arms, burning feet and bowel changes.

She was tested for M.S., lupus and diabetes twice, arthritis and lyme disease more times than one should be and several other tests, too many to mention. In total, Jennifer saw a total of 14 different doctors and went from diagnosis of Arthritis to Fibromyalgia, but nothing seemed right.

Nobody wanted to go further, everyone just kept pushing prescription drugs, which “Jennifer” refused. She wanted answers not a bandaid for her illness. She kept searching and talking to people about what she was going through. While talking to her daughter, a nurse in Colorado, her daughter recalled a friend whose 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 that, was able to take her health into her own hands.

“Right away I was getting possible diagnosis. Every time I went to the doctor I would ask him to check for this or check for that. I kept a very detailed log of doctor visits and tests I had done. I wanted answers!”

And with a renewed vigor, Jennifer was on a quest to search for her correct diagnosis. One Medical Detective suggested genetic testing which struck a cord with her and she sought out a genetic doctor to conduct testing.

After 2 years her CrowdMed results were proven true and she received her correct diagnosis: Spinocerebeller 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 2 years ago. She would fall all the time and became very weak. All the doctor’s said it was Alzheimer’s and Dementia, prescribed plenty of drugs and never did any further testing. Looking back even further, I seen these symptoms also in her father, my grandfather. Again, drugs for his symptoms too.”

Sick of doctor’s pushing prescription drugs, Jennifer sought out alternative medicine for her Spinocerebeller Ataxia with “Hyperbaric Oxygen Therapy,” which had previously helped her beat cancer, and “Aquatic Therapy” to help keep her muscles strong. Unfortunately, with this diagnosis came a prognosis 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.”

“With the help of CrowdMed keeping me upbeat, thinking positive and showing me that you must be your own Advocate, I finally have my answers.” I can’t thank them enough!

Jennifer tells a story that I think reminds all of how you don’t just fight the symptoms of an illness, you fight it off from interfering with your everyday life. You keep it from consuming you and taking away your everyday joys–because that is where the disease will truly win. Having said all that, it’s nice to hear that there are fighters out there like Jennifer who aren’t going to let that happen.