Jan. 06, 2014
Posted at January 6, 2014 4:59 pm by Diane O'Leary, PhD

10 Responses to The Solution to Diagnostic Delay May Be Closer Than We Think

  1. Karen Matthews says:

    I’m a zebra…..thanks for the great article.

  2. Hope says:

    When you have a pre-existing psychiatric illness, it’s even more likely that doctors will chalk up symptoms of a real illness to psychiatric symptoms.

    I had a brain arteriovenous malformation that went untreated for more than a year because my doctor insisted my symptoms (severe dizziness, fainting, headaches) were because of my previously diagnosed depression. When I started having seizures, he said I was faking it for attention because he never witnessed one. Finally I had a seizure at school during which I stopped breathing, and the school sent me to the ER of a research hospital where my doctor didn’t have privileges. The first thing they did was an MRI, and suddenly people believed me. It was a huge relief.

    Last year, I ended up in an ER with excruciating belly pain, severe bloody diarrhea, and nausea. The intern who first assessed me spent 15 minutes trying to get me disclose intimate details of my history of sexual abuse, which wasn’t at all relevant to the presenting complaint. Then she accused me of causing my own symptoms with an overdose even though my tox screen was clean, and she put me on suicide watch. I had to use the bathroom every 5 minutes, but now someone had to watch me with the door wide open. But then my lab results came back, and the intern suddenly started whistling a different tune. She wrote in my chart that my CRP and sed rate were “through the roof.” I was admitted, and when I had a colonoscopy several days later, I was diagnosed with fulminant ulcerative colitis.

    Both times, it was luck that saved my life; either condition could’ve killed me. But because I had a history of mental illness, my symptoms were minimized or ignored. No one should have to deal with that.

    • Hi Hope – I am Executive Director of the Coalition for Diagnostic Rights and we are collecting stories like this to post on our site. Would you consider writing to us if you’d like to participate in something like that?

      The CDR fights for patients’ rights in the context of somatoform diagnosis (or any other version of “it’s all in your head”). The most important of those rights is the right to medical care from your doctor for medical symptoms. There are others, though, that are routinely violated, especially the right to make your own medical decisions – even about symptoms that are, or might be, somatoform, and the right to full disclosure, so that patents hear about all the medical diagnoses that were ignored in favor of somatoform diagnosis.

      Visit us at diagnosticrights.org and send us a note if we can post your story -

      All the best -

      • Jean Shepherd says:

        I want to thank you, Diane O’Leary, for your most excellent letter written to the judge involved in the Justina Pelletier case. Your letter brought reason and well-thought out legal arguments to a potentially trend-setting case of a child with a confirmed diagnosis from one hospital going for treatment of complications from the flu in another hospital from a member of her care team and being given a diagnosis of somatoform disorder and custody removed from parents, treatment for her rare Mitochondrial Disease removed and interred now almost a year in a pediatric “lock down” psychiatric facility in a well known hospital.

        I am Canadian and I live on the west coast. I do not know this child personally but I do know that EVERY patient and every family member with Mitochondrial disease is currently afraid to take their child for care anywhere beyond their present source of care. Internationally, this case is being watched … and finally there is a voice of reason … YOURS!

        Jean Shepherd

  3. [...] really love this post from the National Organization for Rare Diseases about the delay a lot of patients have in getting [...]

  4. Susan says:

    I read where my chances of having mycosis fungoides were 1 in 400,000. This, of course, is the flip-side of this very well written article. Although we may be 10% of the population… our doctors have never seen another case like ours. To my primary care physician I was just a “persistent rash.” To my brilliant dermatologist I was… just possibly… maybe… a cutaneous T-cell lymphoma. Incurable. Often fatal. Other patients with my disease wait as long as 15 to 20 years before they are diagnosed. Then they present with horrible tumors on their skin. Yes, and even then, they are misdiagnosed. Why do PCP’s think that they can ignore the largest organ in the body? The SKIN. Please let me know if you have any brilliant ideas about how to educate doctors. I’ve even had doctors who looked up mycosis fungoides on their PDA’s and told me, “it’s indolent. No need to worry.” Correction! It’s an incurable cancer (expletive deleted) and without the proper treatment by a specialist, it can be aggressive and it can kill you. There must be a way to reach garden variety doctors.

  5. Beth says:

    3 years? Is that after they reach the “wait…maybe she’s not just making it up phase”? ……sigh…

  6. Miriam says:

    I have been paralyzing and falling many times a month since I was 21 years old (now 37 years old). I have Hypokalemic Periodic Paralysis, but doctors in ERs and elsewhere insist that it is Conversion Disorder so that they can stick me in a corner and ignore me for a few hours. Sometimes even worse they give me the wrong kind of IV that is noted as a problem in my medical records due to my condition. Of course then the IV makes the condition much worse, but since they are ignoring me they don’t “see” the excruciating pain I am in or the difficulty breathing. I have been let go from an ER more times than I can count in worse shape than when I showed up.

    • Maureen says:

      Miriam, your post touched my heart and resonated with me because your experience due to your medical condition of Periodic Paralysis is too familiar and too common. There are too many of us who have PP, or other rare conditions, who have experienced too many living nightmares from going to ER’s. When we are most vulnerable, in need of supportive medical care for physical problems that can become life threatening, we are mistreated and become afraid to go to ER. Once I went to an ER because of severe LRQ pain that I thought was appendicitis. I began to have PP episode (didn’t know that was what it was at that time, although I had been having for years). The ER dr acknowledged that I wasn’t a ‘frequent flyer’,(of course not, I was afraid to go to ER’s and see Dr’s because of horrific experiences),but he still refused to evaluate my LRQ pain. No US, no lab work. He said he didn’t believe I had physical problem, that I wasn’t seeing a ‘real doctor’ because I was under care with Chiropractic Neurologists (who are Board Certified with Diplomate in Neurology) and he was going to teach me a lesson. He said that if I didn’t voluntarily admit myself to the hospital psych unit, he would call Deputy Sheriff to 5150 me to County Mental Hospital. I refused to admit myself, the Deputies came. I calmly articulated about the neurological health problems I had been having for years, that I was exercising my right to see doctors of my choice who are Board Certified, licensed and recognized by the State as legitimate physicians who are Chiropractic Neurologists with Diplomate in Neurology. Eventually the Deputies decided not transport me to the County Mental Hospital. My LRQ pain was never evaluated at that time (ended up being PCO with a rupturing ovarian cyst that required surgery). Thank goodness I was able to talk to explain to deputies because there are times I get to weak to talk, my voice goes away and along with progressive weakness, my breathing is now becoming affected. That was one of many experiences that have given me fear about going to ER’s. I was afraid to go to another hospital, and I was afraid not to. And there have been a few times when I’ve had stroke-like symptoms that I didn’t know if I was having an exacerbation of the neurological problems or having a stroke, I would sit in the parking lot of the hospital for hours to see how my symptoms progressed, even though I knew that if if was a stroke that time is of the essence. So many other experiences of being discounted, getting IV’s at ER’s that exacerbated the PP…no wonder I am reluctant to seek care at ER or go to hospital. This past January I ended up having pneumonia and put my life at risk because of fear of ER/hospital. Miriam, you’re probably aware of a support group on Facebook for people with PP. If not, it’s called Periodic Paralysis Network. It is a resource that is helping me through connecting with other people with PP. And has helped me find another person who has PP who receives medical care in the area I live. Because of her experiences with health care providers and local hospitals, she knows which physicians who are aware of PP and are not discounting and who have helped her and which ones to avoid! Finding a doctor and feeling safe about going to an ER/hospital seems to be something that people with PP feel is so unattainable, yet we keep hoping…

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