Before 2013, Lula* was living a happy life. She was an active, lively person who loved being outside. She was a hiker, a gardener and had just gotten married, life was pretty great.
But one day, Lula woke up and realized that her feet had gone completely numb, she couldn’t remember the last time she had felt them.
Continue reading A Numb Pain: Patient Lula’s Story
Tori* was an active person who used to working out frequently. One day while working out, she was suddenly struck with a crippling dizziness that would stick with her for 7 years.
Continue reading Make The Spinning Stop: Patient Tori’s Story
Before falling ill, Mac* was an incredibly active person. He enjoyed participating in biathlons, scuba diving, and adventurous traveling, just to name a few.
In October of 1996, Mac traveled from Victoria Falls to the south of France and then to Cancun and somewhere along the way, he contracted a virus and began feeling constantly fatigued.
Continue reading Hard to Hear, Better to Know
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.
Continue reading The Persistent Patient: A Lesson In Taking Back Your Health Care
When patient Lenard* was a medical student, he noticed a lesion on his shin that at first glance appeared to be dry skin. Unlike dry skin, though, this condition proved to be anything, but temporary and persisted for months.
Continue reading 14 Years to Diagnosis: A CrowdMed Patient Success Story
“Same story, different day.”
That’s my default response when people ask me how I’m doing. And it’s the truth.
When I last detailed my grueling diagnosis journey, it had ended on a hopeful note. There was one remaining obstacle, however. I still had to confirm CrowdMed’s suggested diagnoses with my doctor. But I can’t afford a doctor or health insurance, so I wasn’t sure how to move forward.
Continue reading My 10-Year Diagnosis Journey: An Update
As many rare disease sufferers know, sometimes the key symptom that leads to a diagnosis may be mundane or bizarre. Whether you are healthy or chronically ill, daily life is full of other concerns to distract you from the seemingly harmless quirks of your body. Many of these strange ailments are completely benign or explained by something you had not considered, but some may be a message from your body that something is wrong.
Keep in mind that most of these symptoms may occur periodically in any person’s life and are easily explained by other causes. If your symptom becomes severe, seek medical attention immediately. If you are experiencing other health issues, however, you may want to mention your strange symptom to your doctor. It could be another clue in finding the right diagnosis.
Continue reading 7 Strange Symptoms You Shouldn’t Overlook
There was a time in history when nearly every medical condition recognized today was an unidentified mystery. Rabies victims in Europe inspired stories of the holy water-fearing undead and citizens of Salem suffering from Ergot poisoning were hanged for witchcraft, long before medicine had a name and a treatment for either malady. As medical research and happy scientific accidents led to discoveries like Germ Theory and penicillin, our ability to identify and address common health concerns grew.
Although we have come a long way since the days of humor balancing and unnecessary bloodlettings, there is still a lot that the healthcare field doesn’t know about the complexity of the human body or its response to our ever-changing environment. In fact, some of the conditions that we would never second guess today were dismissed by the medical community less than a century ago. A few of them may surprise you.
Continue reading 5 Diseases Modern Medicine Missed For A Very Long Time
Lupus: The Basics
Inside nearly every human body, there exists a vast expanse of cells that fight infection. Like a tiny army, it descends upon foreign invaders and swiftly eliminates the threat. It most cases, it’s a system that works well. In some cases, however, a significant problem arises.
Lupus, occurs when the human immune system destroys infection as well as health tissue and organs. As a result, patients will experience ongoing pain, inflammation, and malfunction throughout the body (Understanding, 2015).
One of the most distinct symptoms of lupus is a persistent rash across the nose and cheeks called a butterfly rash. There are also a host of other symptoms including debilitating fatigue, headaches, fever, pain and swelling on the joints, chest pain, hair loss, and ulcers of the nose and mouth (Diagnosing, 2015).
Continue reading Diagnosis Spotlight: Lupus
A new phenomenon is rising in prominence in the public discussion of health. Despite the significant improvement in clinical procedures, a small but important part of the population evades an easy diagnosis. Often referred to as Medically Unexplained Physical Symptoms (MUPS or sometimes MUS), patients who suffer from these clusters of seemingly unrelated complaints stump general practitioners and specialists alike.
On average, U.S. patients with rare undiagnosed or misdiagnosed conditions wait a little over 7 years for a diagnosis. The longer a patient waits for an answer to their medical mystery, the more uncertain they feel about not only their health, but also their future. As time goes on and the uncertainty grows, the chronically undiagnosed start to believe that those around them are skeptical that their illness exists. Eventually even they start to question, “Is it all in my head?”
Continue reading What To Do When The Doctor Says “It’s All In Your Head”