The Price of Misdiagnosis- Part II

The Price of Misdiagnosis- Part II
| by Sylvia Reisman

This blog post is part two in a series based on a true story. Please read "The Price of Misdiagnosis, Part I" (posted on March 1, 2024) before reading this post.

In 2020, the US Department of Health and Human Services estimated that 157 million Americans will be afflicted with a chronic illness and the US Census Bureau estimates 96% of chronic illnesses are invisible.Millions of these invisibly ill individuals are women who have a chronic, complex illness with no identified root cause. Sadly, our current, conventional healthcare system is fragmented and not designed for a complex patient with unusual symptoms to obtain a timely, correct diagnosis.

Women, in particular, are made to feel as though they have anxiety or it must be «All in Your Head.»You may have heard this referred to as «medical gaslighting.» The standard/conventional medicine model is based on addressing symptoms instead of identifying the root cause. This can pose a serious problem for a complex patient as they are shuffled among multiple physicians with no concrete diagnosis or end up being misdiagnosed.

The Bottom Line: No One Should Have to Suffer Long Term While Trying to Obtain a Correct Diagnosis and Treatment Plan.

As the story continues, Lauren traveled back to her hometown to express her concerns to another gastroenterologist (Dr. Hunt). Dr. Hunt didn't initially take Lauren's concerns seriously. In this true story «twist,» he offered her the option of taking a new blood lab test that could determine whether she really had inflammatory bowel disease. Lauren was enthusiastic and chose to take the test.

In between the time she took the test and her follow-up appointment with Dr. Hunt, Lauren saw a knowledgeable allergist (Dr. Haysman) and brought her long term Inflammatory Bowel Disease medications to him.

Lauren had kept a detailed food diary and reviewed it with Dr. Haysman. She shared her concerns and questioned whether she could be intolerant to salicylates (aspirin compounds) which the medications contained. He AGREED that she had salicylate intolerance and advised her that she shouldn't be taking the medications previously prescribed for her IBD.

He helped her find a new gastroenterologist who he knew would work with her to find a new medication that could be compounded and free of salicylates. When Lauren went back to Dr. Hunt for her follow-up, he became extremely defensive when she shared what her allergist had advised her to do.

Dr. Hunt sarcastically told her that he would be happy to refer her to another specialist.

Lauren's Reply: «I already have a referral from my allergist. I told you what my allergist said about my salicylate intolerance.»

Dr. Hunt's reply: «I don't want to hear about salicylates anymore!»

In the meantime, Lauren requested her complete medical records file and upon review of the specialized blood lab test results, discovered that she was NEGATIVE for inflammatory bowel disease!

Lauren's ten year journey of suffering should have been stopped years earlier BUT….........
What physician has quality time and training to properly evaluate, investigate and diagnose a complex case involving multiple organ systems, infections, allergies, medication intolerance and genetics? We can't place an exact dollar figure on Lauren's emotional suffering but Lauren's losses from her inability to work full time for years, her retirement fund losses, and her divorce left her struggling physically, emotionally and financially.  Her financial losses over a 15 year period could conservatively be projected at $1,000,000.

Communication is Critical When You Have a Complex Illness

Unfortunately, most physicians do not pick up the phone to speak to each other about patient cases. This leaves you in a bottomless rabbit hole, left to suffer with a poor quality of life. Lauren almost had a colostomy as a result of Dr. Hunt's poor listening skills, lack of empathy/concern for her and his poor communication with her and her allergist… He never offered Lauren any treatment options when she brought him legitimate concerns.

When you retain a knowledgeable Professional Health Advocate, they ensure your healthcare team is informed and coordinate your care. They look out for your best interests, serve as your trusted negotiator and ensure your concerns are taken seriously.

Lauren now knows that she doesn't have inflammatory bowel disease but It her took another 6+ years to uncover the root cause(s) of her ulcerative colitis/proctitis/IBD. Lauren hasn't taken IBD medications in ten years but wonders how many people have been misdiagnosed and are suffering unnecessarily. 

As the saying goes, “You don’t know what you don’t know.” Lauren’s complex case is a prime example of why retaining a Professional Health Advocate can save you years of unnecessary suffering; physical, emotional and financial.

The Takeaway: Don't Sit Back anjd Wait For Your Doctor to Solve Your Complex Case. Be Proactive and Seriously Consider the Benefits of Retaining a Professional Health Advocate.

So you might be asking yourself: Who is Lauren?!Lauren is actually ME and one of the reasons I started my professional health advocate practice!To learn more on why many patients are being misdiagnosed and how I develop customized strategies for my clients, please watch my recent interview with Jon Dabach!

Sylvia Reisman


Purity Patient Advocates LLC