Misdiagnosis: Eight People Tell Their Stories

Patient Expert

Two days ago, as a Question of the Week, I asked:

Were you misdiagnosed with depression or something else? How long did it take before you finally received the correct diagnosis?

The eight responses I received so far are extremely illuminating, and serve as excellent case studies for what our population has to go through. Let's go down the list, one by one:

Kad writes: "In the past I had been sort of diagnosed with depression by various doctors," who gave her SSRIs, which never worked for her. Four years ago, a doctor diagnosed her with bipolar, but the meds made her feel worse. Another doc diagnosed her with a personality disorder, before yet another doc "officially" reinstated her as bipolar. She reports doing a 180 since being on lithium and three other meds. "I love having no money," she concludes, "and my pills being so GD expensive ... too rich to get benefits, too poor to afford anything."

Tabby rattles off a whole diagnostic cornucopia over 30 years since age 10: Recurring major depression, psychosis NOS, GAD, and PTSD. She was treated with the full range of psychiatric meds, of which none worked or that she developed severe reactions to, including antidepressants that "sent me soaring."

In 2006, during the most recent of her five hospitalizations, she was diagnosed with bipolar II. According to Tabby: "When I was diagnosed, I did not doubt it.  In fact, something within me deep down just clicked.  I knew what I knew is what I knew to be true.  First time in my life that this had happened.  I knew what I knew to be true and accurate..."

Angieflowers reports how her diagnosis of chronic depression was difficult to accept, and when bipolar was mentioned, "I stayed in denial  successfully  with alcohol and pills." Finally, during her third hospitalization, "I finally opened up a  pamphlet  on bipolar." She took her meds as directed, and "I was able to see reason. ... I've been struggling with this disease for over 25 years since I had turned 16 years old and I was 40 when I excepted it as something I would have to live with and take care of for the remainder of my life.  Life is good now."

Princessjodi was diagnosed with generalized anxiety disorder and then told she had no problems and "to just get over my fear." She was finally diagnosed in 1999, but it took her nearly eight years to find the right meds cocktail. She has had no problems since.

Cretin experienced mostly depressions (the hypomanias were brief and didn't seem to be a problem), and she was put on numerous antidepressants, "but all they did was make me cycle faster, so I was in effect more depressed than before the ADs." After Remeron sent her into orbit, her doctor tried her on various mood stabilizers. Finally, her doc recognized psychotic symptoms and tried her on an antipsychotic, which "finally stopped the recurring depressions and quelled the psychosis and a very noisy mind. I am living better through appropriate chemistry."

Anonymous was diagnosed with depression at age 16 and prescribed Zoloft, "which was making me like a bunny on mass caffeine consumption." She was put on Paxil, but her depression worsened and she gained 40 pounds. Unable to hold onto her job, she found a new doc, who "cocked his head, asked about my family's mental health history (my grandmother and my aunt on my mother's side have BP I and my aunt has depression), and asked me 'Did anyone ever ask you if you thought you might be bipolar?' I said no, because I felt better sometimes, but that I was usually depressed."

Then, after more questions, "he gave me check list of bipolar symptoms. I went through it, checked it off, looked back at it, and I had checked off nearly the whole damn thing." And ...

"It made SENSE I felt like I had a real answer! A week later, after weaning myself from the Paxil, I began taking Lamictal and noticed an immediate change, and so did everyone I know. I lost 30 pounds, my relationships improved; I found a job, etc."

She concludes: "I will ALWAYS have to deal with having BP II, and I am a lot better about monitoring my symptoms and I am so grateful to my doctor to helping me get my life back. I spent 11 years on the wrong meds and destroying my life because I was misdiagnosed."

Palegreen reports being misdiagnosed with depression, with her antidepressants not working. "I'm not going to lie," she confesses. "I love the feeling of being manic. It's better than any drug." But now that she is on lithium and other meds, "I don't know who I am. I don't even know if I am the same person in my head. All I can say is that BIPOLAR SUCKS!!!!!!!"

Finally, Bwolf offers up a much-needed loved one's view: First, his wife's diagnosis was PMDD, then mild depression. Antidepressants made her cycle faster and "seemed to amplify her mania episodes." After ten years, she became hypersexual and had more than one affair, which ended the marriage. Concludes Bwolf: "It's my belief that my ex has been misdiagnosed all along and I also believe that she is bipolar, but she refuses to see any other doctor nor does she want to stop seeing her counselor either. I am afraid it will be years before she gets a proper diagnosis and by then it may be too late for her to have any semblance of a fulfilling life."

There you have it. Sometimes you just want to scream at the doctors for their stupidity. Other times, we have to be more philosophical. And yet again, sometimes we are our own worst enemies. The stories here tell it all. I don't have to say any more, but I strongly urge you to. Please feel free to tell your own story, either by replying to my Question of the Week, or by going to the comments below.