Living With an Undiagnosed Auto-Inflammatory Disease: One Woman's Decades-Long Medical Odyssey
Alison Couture has been suffering from mysterious symptoms and excruciating pain for over 20 years, but doctors have been unable to provide her with a diagnosis. In a raw interview on The Medical Maze podcast, Alison shares her agonizing journey of coping with countless unexplained symptoms that have profoundly impacted her life.
Diagnosed with Crohn’s Disease as a Child
Alison’s struggles began at just 7 years old when she was diagnosed with Crohn’s disease after experiencing extreme gastrointestinal distress. She was taken to numerous specialists and forced to undergo medical procedures like colonoscopies at a very young age.
Crohn’s disease is an inflammatory bowel disease that causes inflammation and damage to the digestive tract. Symptoms include severe diarrhea, fever, fatigue, abdominal pain, and weight loss. While the condition can’t be cured, it can be managed through medication and lifestyle changes.
Mysterious Symptoms Emerge
While the Crohn’s diagnosis explained some of Alison’s issues, she soon started developing new symptoms unrelated to her gastrointestinal problems. She experienced migrating arthritis pain, severe fatigue, Raynaud’s phenomenon (reduced blood flow to the extremities in cold weather), and random inflammation flare-ups on her body triggered by stress.
Despite her mother taking her to various doctors and specialists, none could determine the cause of these myriad symptoms. Alison also felt dismissed and gaslit by medical professionals who downplayed her concerns. This left her feeling isolated and frustrated.
Seeking Answers
Now an adult, Alison continues to desperately seek an answer for her decade-long undiagnosed symptoms. She has undergone countless medical tests, seen specialists across disciplines, and even tried alternative treatments like acupuncture to no avail.
Doctors now believe she may have an auto-inflammatory disease, a rare disorder caused when the body’s immune system attacks healthy cells by mistake. However, since the symptoms migrate and testing hasn’t revealed the specific condition, she feels stuck in a “medical maze” with no diagnosis.
The Impact of an Unknown Condition
Living with chronic mystery symptoms has not only caused Alison physical pain but took a toll on her mental health, relationships and everyday life. As a child, she felt isolated from friends and like a burden to her mother. Dating and intimacy are challenging due to her health limitations. Holding down a job has also proved difficult.
Hope on the Horizon
After decades without answers, Alison finally has a referral to the National Institutes of Health (NIH), which offers specialized testing for rare diseases. She hopes studying her case will finally lead to a diagnosis so she can get proper treatment. Her story highlights the frustration many patients face when dealing with medical uncertainty.
Key Takeaways:
- Alison has suffered from unexplained symptoms for over 20 years, negatively impacting her life.
- Doctors believe she may have an undiagnosed auto-inflammatory disease causing her myriad symptoms.
- Her referral to the NIH represents long-awaited hope of finally getting a diagnosis and treatment plan.
- Living with an unknown chronic illness can be isolating and detrimental to mental health.
- Alison's story puts a human face on the struggle many patients go through seeking a diagnosis.
You can watch Alison's episode HERE
