Jesse’s Health Update, Travel Accessibility, Listener Questions with Andi

This week we have a community focused episode with Jesse and Andi. First they share an email from listener Morgan, and discuss the ramifications of multiple misdiagnoses when searching for answers to a mystery disease. Then they dive into Jesse’s health update, including progress towards finding a diagnosis and the Read more…

Registered Nurse on Navigating Healthcare System for Pain Patients

Many people with chronic pain, undiagnosed disease or invisible illness run into constant barriers when seeking medical care. Doctors often don’t take their symptoms seriously, or assume nothing is wrong when they can’t immediately pinpoint a cause. For people dealing with dynamic illness, understanding the medical system well enough to Read more…

Living with Multiple Sclerosis: Diagnosed at 19, Thriving at 34

15 years after her multiple sclerosis diagnosis, Lauren has learned to live comfortably and happily with her disease. She now conceives of MS as a friendly neighbor, something that pops by and says hello from time to time without weighing upon her daily life. Reflecting back on her diagnosis at Read more…

Living with CREST, aka Limited Scleroderma

When Cammie and Evan’s two boys were 1 and 2 years old, Cammie was diagnosed with CREST disease. CREST, also known as limited scleroderma, is an intensely painful rheumatic condition with a wide variety of symptoms that progressively affect the entire body. Cammie was told if she did everything right Read more…

Living with a Pituitary Adenoma

Three years ago Andi Alhadeff was stricken with a sudden influx of intrusive thoughts, a condition often associated with OCD, along with extreme anxiety and nausea. Blood tests showed elevated prolactin, a hormone produced by the pituitary gland. Further testing revealed that Andi had a pituitary adenoma (or prolactinoma), a Read more…

When Unexpected Illness Prompts Career Changes

Justin Balch has lived many lives, having been derailed several times by chronic pain and health issues. While studying as a saxophone performer he developed a mystery pain that forced him to put down his instrument permanently. He adjusted course and became a professional audio engineer, until a barotrauma caused Read more…

Rolling with a Mystery Disability

Like millions of other Americans, Mya suffers from a disabling undiagnosed disease. She experiences constant pain, brain fog, and requires a wheelchair to be mobile. But she is also a viral TikTok sensation, known for her joyous attitude, dance moves and social activism on behalf of the disabled community. In Read more…

Living with Charcot-Marie-Tooth Muscular Dystrophy

Charcot-Marie-Tooth (CMT) is a rare form of muscular dystrophy that causes damage to peripheral nerves. It manifests in a variety of ways depending on the individual, but generally causes degenerative muscle weakness and atrophy in the arms and legs. For Brandon Sullivan, it has manifested in having to walk painfully Read more…

Yael

Living with Generalized Anxiety Disorder

Like millions of others in the US, Yael suffers from generalized anxiety disorder (GAD). As is often the case, Yael experienced the effects of this disorder from an early age, her reality being that of constant worry and intruding thoughts of disaster. It was not until receiving her GAD diagnosis Read more…

Living in Recovery from Drug Addiction and Alcoholism

Kenny Alhadeff is the chairman of Elttaes Enterprises, the Alhadeff Family Charitable Fund and a Broadway producer. He is also a drug addict and alcoholic, who has been successfully living in recovery for 36 years. In this episode of the Major Pain podcast, Kenny shares the story of learning to Read more…