Misdiagnosed: The Search for Dr. House

By Nika C. Beamon

When a lymphoma scare threatened the life of a journalist, she began a quest to find the correct medical diagnosis for the mysterious illness she'd battled for nearly 20 years. She turned to her favorite TV show, House M.D., for inspiration. She used her research skills to look for a "real life" Gregory House to give her some answers. In this brutally honest memoir, Nika Beamon reveals how she found the doctor who saved her and how you might be able to also.

• Language: English
• Publisher: Nika C. Beamon
• Release date: Jul 28, 2014
• ISBN: 9781310125287

Nika C. Beamon

Author Biography: Nika C. Beamon is a TV News Writer/Producer in New York. She pursued a BA in Communications and a BA in Sociology at Boston College in Massachusetts. Beamon has been credited as a reference in the several books on television news and has also won many awards throughout her career including a Peabody Award for ABC News’ coverage of the September 11th Attacks. In 2009, Chicago Review Press published her well-received non-fiction book: I Didn’t Work This Hard Just to Get Married: Successful, Single Black Women Speak Out. In 2000, she published her first mystery novel, Dark Recesses. In 2002, her second mystery novel, Eyewitness was released.

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Praise for Misdiagnosed

This is a book is a must read for all doctors and healthcare professionals. It details the quest from the perspective of a patient for a diagnosis suffering from non-descript complaints that typify the autoimmune diseases. Enigmatic to most physicians, devastating to patients, the stuff of science fiction, and limitless in presentation; autoimmune diseases are the frontier of medicine in the 21st century. They demand an understanding of complex science and while practicing the art of medicine with compassion. Nika seeks answers from learned doctors while her personal and physical life crumbles around her. Read her story to understand why patients long for a diagnosis.

— Robert G. Lahita MD, PhD, FACP, MACR, FRCP Chairman of Medicine and VP, Newark Beth Israel Medical Center, Professor of Medicine, UMDNJ

Misdiagnosed is a gripping medical detective story. It could be a fictional episode of House from the patient’s perspective, but this story is real. It is a raw telling of Nika Beamon’s journey through high-tech American health care. Just as she recounts stripping naked for doctors’ probes and surgeons’ scalpels, Beamon bares hers physical and emotional tribulations to readers."

— Andrew Holtz, MPH

Author of The Medical Science of House, M.D.,

House, M.D. vs. Reality, and The Real Grey’s Anatomy

This long-overdue book overcomes a long tradition of silence and isolation for women with misdiagnosed and rare illnesses, especially for African American women. But everyone with an invisible illness, whether named or not, will relate to Nika Beamon’s hidden dramas in her life, dealing with the daily frustrations of a mysteriously uncooperative body —and then, often worse, with an ill-equipped, punishing medical system. Written with the intimacy and boldness of a conversation among best girlfriends, she fearlessly portrays the heartaches of living with a little understood and rare immune disorder, and how it affects every area of her life.

— Paula Kamen

Author of All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache

"I read Misdiagnosed and just wanted to share with you that I love it! It is well written, fiesty, and witty, while managing to capture the seriousness of the situation and all the emotions that go into it. I will definitely tell my friends and family to buy it."

— Nicoletta Skoufalos, Ph.D.

Licensed Clinical Psychologist

http://psychologyofchronicillness.blogspot.com

"As the Health Communications Manager at the National Women’s Health Network, and having spent 5 years working for the National Women’s Health Information Center, a contract sponsored by the Department of Health and Human Services Office on Women’s Health, Nika’s story was all too familiar...

Hearing about the ups and downs of your relationship with Bryce really drew me in and not only made it a medical drama but a love drama as well…

It took you almost two decades to finally figure out what was going on with you. Most people would have given up and just succumbed to their illness. But to see you take your health care in to your hands and continue to fight for what you felt was the right diagnosis was truly amazing.

I believe it will truly help someone as they are on the quest for their own. More people need to realize that doctors truly don’t know everything and that doctors can be learning about a patient’s illness right along with them!"

— Shaniqua D. Seth

Health Communications Manager

National Women’s Health Network

Misdiagnosed

The Search for Dr. House

Nika C. Beamon

Misdiagnosed: The Search for Dr. House

By Nika C. Beamon

Copyright © 2014 Nika C. Beamon

Smashwords Edition

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law.

Second edition 2017

Book cover design by Tugboat Design

The names of certain characters have been changed to protect the privacy of some people in the book. In particular, the character written about the most in advance reviews named Marc is not the person’s actual name nor is it anyone with whom I am presently in a relationship.

Additionally, this book is not intended as a substitute for the medical advice of physicians. The reader should regularly consult a physician in matters relating to his/her health and particularly with respect to any symptoms that may require diagnosis or medical attention.

This book is dedicated to all those who like me know:

Illness may temporarily reign over my body but I, along with God, am the ‘captain of my soul.’ I am loved. I’ve been loved. I have more love to give so I cannot and will not surrender.

Foreword by Rhonda R. McCullough

My emotional rollercoaster began when my husband, Bernard Jeffrey McCullough, better known as Bernie Mac, was misdiagnosed back in 1984. He was just 27 years old. Normally, a very active and sports driven individual, Bernard began to experience shortness of breath and lethargy while engaging in his routine sports activities. For this reason, he went to the doctor. After a thorough exam and further testing, the doctor told him he had lung cancer. The news was devastating. He felt immediate panic, fear, hysteria; the truth is he was just plain freaking out.

I tried my best to calm my husband down using my medical background as a nurse. I calmly but firmly talked with Bernard. I told him, No, this is not what you have; do not accept that diagnosis. Let’s get a second opinion. Bernard followed my advice and went to a second doctor.

That doctor said, I have an idea of what this is but I have to be sure.

A bronchoscopy test was ordered. With this test, a surgeon actually went in and took a piece of Bernard’s lung and sent it out to be examined.

When the results came back, Bernard was diagnosed with Sarcoidosis, a syndrome causing chronic inflammation of cells and organs in the body.

I thought, Sarcoidosis. Wow, what is that?

Unfortunately, no one really explained what the disease entailed and how it would affect our lives. The doctor only told us that little was known about it and that there was no cure or medication to treat it.

She said, If it doesn’t bother you, don’t bother it.

Bernard was not as nervous about this second diagnosis as he was with his first. He had calmed all the way down so our lives continued. For 15 years he lived symptom free. He was on no medication and he wasn’t feeling sick at all. It wasn’t until his career was flourishing that his Sarcoidosis flared up again. His heavy tour schedule, movie shoots, travel, and press junkets, combined with a lack of rest and the stress of it all caused the disease to rear its ugly face. And, it was back with a vengeance.

Bernard was plagued with a shortness of breath. He also seemed to catch a cold very easily and he was always tired. It didn’t seem he could get enough rest. He could sleep all day ‘til 3pm.

I thought, Oh no, is Sarcoidosis about to change our lives forever?

Frustrated, Bernard returned to the doctor. He went to a pulmonologist this time for a full exam and a chest x-ray. The chest x-ray results revealed that he had scar tissue on his lungs. We didn’t know it then but Bernard later learned he had Sarcoidosis of the lungs.

The doctor prescribed prednisone, an anti-inflammatory medication which helps keep down the swelling and opens up the lungs. It also comes with tons of side effects. The few that concerned Bernard were weight gain in the face and stomach, an irregular heartbeat, swelling of the ankles and feet and suppression of the immune system. He didn’t like taking the drug because of the physical side effects and how it made him appear on camera, especially while he was filming the Bernie Mac Show.

In addition to having a puffy face during the show, Bernard began to suffer additional problems from long term use of Prednisone. Among them was: constant urination, weight loss and excessive thirst. We should’ve known right away that something greater was going on but we had no idea prolonged use of Prednisone could even cause diabetes. It didn’t take long though before my medical training kicked in and I recognized Bernard’s symptoms were those of a diabetic.

I strongly urged Bernard to go to the doctor once again. He did and my assumption was correct. He was diagnosed with diabetes and was prescribed oral medication. When that didn’t do enough, he was prescribed insulin, which he took for the last two years of his life.

Despite being misdiagnosed and not being well-informed about the hazards of his condition, Bernard never tried any alternative treatments. He believed and stood by the medical profession. He never worried about all the drugs he took and the side effects that accompanied them, even those that suppressed his immune system. He had a lot of faith and confidence in his doctors, perhaps to his detriment.

Often times, I felt my husband was being experimented on like a guinea pig. I knew some of the prescribed medications made him feel sicker than he felt when he wasn’t taking anything at all. One drug in particular that was truly devastating for the both of us: Methotrexate, a powerful chemotherapy drug was used as a treatment for breast cancer. After reading about all of the side effects, I begged Bernard not to take this.

I yelled, Please don’t take this drug, please!

Bernard said he was going to take it anyway. He told me, The doctors said it should work really well. Plus, you’re not a doctor, you’re a nurse.

Bernard didn’t get too ill quickly but as he kept using Methotrexate, he began to have an adverse reaction to it. One time his breathing trouble became so severe an ambulance had to be called. I wasn’t with him at first. I was in Chicago on jury duty when I received the call at 5AM and had to catch a flight to LA. By the time I got there, he was in the hospital in the intensive care unit.

A diehard professional, Bernard had a very strong work ethic and did not allow his medical issues to become a setback. So, when he got better, he was back on the set at the Bernie Mac Show. He went full speed ahead. He met his deadlines and obligations with eagerness. However, when he was at home during his hiatus, I began to notice a difference in his lust and enthusiasm for life.

Red flags were raised for me when Bernard became reclusive. He didn’t want to do anything. He didn’t go anywhere; he slept a lot and didn’t want his friends around. All of this was odd because he always enjoyed a party and a house full of people. He loved to entertain.

His change in demeanor was the only outward sign that Bernard’s illness was taking a toll. He did not look sick. In fact, I always thought he looked healthy so I could not understand why he wanted to stay in the bed for so long. I had no idea how he was feeling internally.

At one point I said, Why don’t you get up and go sit on the deck, I’ll make you some lunch, thinking that getting up would make him feel better.

Bernard told me, You don’t know how I feel.

This was a wake-up call for me. I took a step back and realized that I really didn’t know how he felt.

After my poor assumption, I began to have more compassion and tried to gain greater insight into what Bernard was going through. By now, in addition to his Sarcoidosis of the lung and skin, he was suffering from hypertension and diabetes. So, I stopped nagging him to get up and out of bed now. I tried to make him as comfortable as I could, giving him the things that he wanted and not what I wanted. I also paid more attention to his diet, and gave him his favorite foods. He was an avid fast food eater. He loved Old Country Buffet, Pepe’s, Harold’s Chicken; he ate it all!

I really began to see a change in Bernard, once I changed. He was socializing more. He began to call people. He left the bedroom and he even came downstairs to watch TV. My joy for a more normal existence was short-lived however.

His health deteriorated once again and as the caretaker of my husband, I stood helplessly by as it ultimately took his life way too soon. He died in 2008 at just 50 years old.

Since my husband’s death, I’ve become an advocate for Sarcoidosis patients and caretakers, traveling and speaking on behalf of the Bernie Mac Foundation. It’s been amazing to find that we all shared the same common bond and similar experiences.

Many people have also shared stories with me about being misdiagnosed, the risks of certain medications, and the misconceptions they’ve encountered about their health because they don’t look sick. I’ve often heard horror stories about finding the appropriate doctor and medical attention and the great financial challenges of living with an autoimmune disease.

What I’ve learned is that the way patients and caregivers get through the difficulties of managing a chronic illness is with the help of a support system in place; be it a group, family, or friends. It is impossible to survive without that. I strongly identify with that, because during those times in dealing with my late husband Bernard, my faith, family and friends kept me grounded.

Allow me to say, what an honor and a privilege it was to write the Foreword to this wonderful book. This book is long overdue and very pertinent to my life with Bernard Jeffrey McCullough, better known as Bernie Mac. Thank you Nika for having the courage and the strength to bring awareness to this topic.

Rhonda R. McCullough

Preface

Freak of Nature

I am a freak of nature. I have a condition few others in the world share, but at least I know that now. I spent the better part of my twenties and all of my thirties, which should’ve been my carefree years, trying to find someone to tell me what was wrong with my body. In 2004, I was so desperate I began watching the TV show House M.D., hoping it could help. I tuned in every week not to see how Dr. Gregory House would misbehave but to see whom he’d be treating, if he’d have a case like mine. It never happened; I never saw anyone with the exact same symptoms. I was disappointed but not surprised. By this time, I’d already struggled for eleven years to find an answer about what ailed me.

My life changed dramatically my senior year at Boston College in Massachusetts in 1993. I’d planned to spend it partying with my friends and enjoying the spoils of my hard work trying to earn a dual degree in communications and sociology. I never got to do that. I began suffering a rash of 104-degree fevers, joint pain, and debilitating fatigue that made it impossible for me to make it to class most days. I adjusted: I had my assignments brought to me in my room, sitting a Mac on my lap to type papers, and I had friends over instead of going out. I didn’t know it then, but it was just the beginning of the changes I’d have to make in my life.

At first I endured minor inconveniences, like a few days bedridden each month, a doctor’s appointment every two weeks, and a couple of pills. These weren’t things that prevented me from beginning a demanding career in television, which required working long hours and some weekends. I was able to focus on learning all aspects of the business, including writing and production. I also had the energy to join a softball team, volunteer for charity sports tournaments, and spend time with my boyfriend.

A few years later, my body began to decline rapidly. Right after I broke up with my boyfriend, moved back home to the New York–New Jersey area without a job, and started writing my first book, my aches, pains, and fatigue made it nearly impossible for me to concentrate on anything, let alone get out and look for a job. I was quickly depleting my savings, and I had no health insurance. It was the first time my failing health made me wonder what kind of future I’d have, especially on my own.

My symptoms soon eased, though, and I was able to take a job at Classic Sports Network, which became ESPN Classic, in New York. As HR/office manager, I was pretty sedentary, saving my energy for activities after work, such as finishing my novel and jumping back into the dating scene. I thought I’d found a way around the nagging condition that had slowed me down, but I’d only paused it.

It took four more years for me to realize I wasn’t in control of my body at all. A stabbing pain in my abdomen greeted me as I stepped inside the Eyewitness News office in New York for the first time, on April 20, 1999. I was concerned but didn’t have time to deal with it. The newsroom was bustling. People were running around, shouting and cussing. I’d come in just moments after word had spread about the Columbine High School massacre.

I scurried into a chair and tried to shake off the pain while maintaining a professional exterior. Good thing I collected myself, because within minutes, my new boss, who had failed to reintroduce himself, was asking me to make travel arrangements for a reporter and cameraperson.

Welcome, Nika, he said. I hope you are settled in. I need you to book two tickets to Denver, Colorado, for Nelson Gregg and Steven Sharp.

Who? I thought but didn’t ask.

They need to get there as soon as possible.

Is there a return date?

No, not right now, he barked. They will also need a car and a hotel, though.

I didn’t even know how to use the phone, but I quickly figured it out. I dialed the number for ABC Travel, mounted on the wall above the phone, and prayed the person on the other end knew the crucial details, like how to pay for the tickets and hotel.

Joanna speaking. How can I help you? the voice on the other end of the line said.

This is Nika Beamon from WABC-TV. I need to get two tickets to Colorado as soon as possible.

No problem. Let me tell you what your options are.

Joanna rattled off the possible flights and helped me select the best one for the station’s crew.

Did you need a car and a hotel booked for them as well? she asked.

Yes, please.

It took less than fifteen minutes for me to complete my first task as the new newsroom manager at the number-one local-television station in the country. I did it without letting on that the pain in my gut made me want to double over.

This is only half the job, I thought, as I rubbed my abdomen with a fake smile plastered on my face. I had also agreed to produce a live sports segment on Friday mornings at 4:00 am. I wonder how I’m going to pull this off.

The demands of my career took a toll on my frail body very quickly. A mere year and a half into my job at Eyewitness News, I was spending less and less time going out after work. It