1. Health
Trisha Torrey

Use the Internet to Self-Diagnose? Why Not? Here's How

By February 12, 2013

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I was recently contacted by Jason Maude, a gentleman who lives in Great Britain, and who I've known about since the very early days of doing the patient empowerment work I do. It was like hearing from an old friend.

You see, about 10 years ago, Jason's young daughter, Isabel, was misdiagnosed, and it almost cost her her life. She has since recovered (is now in her mid-20s!) but Jason, a proactive survivor, knew what he needed to do once Isabel recovered.

He developed an extensive and exhaustive system to help doctors more accurately diagnose their patients. Its capabilities are well known today among doctors and the health centers that purchase the system. In a conversation not long ago with a doctor, I asked him whether his hospital used the Isabel system. "If only we could afford it, we'd install it in a heartbeat," he told me.

As you can imagine, when I began my very public, online patient empowerment work in 2005, talking about misdiagnosis in a blog (how many people do you know who had a blog in 2005?) - Jason got in touch. Since then his company's capabilities and reach have expanded to its global reputation today.

The reason Jason contacted me more recently was to tell me that there is now a patient-friendly version of the Isabel system. It's free for patients to use, but it was developed with that same goal in mind - to help patients more accurately diagnose themselves, or to provide access to good information about a diagnosis they already have.

So it got me to thinking. Hmmm.... self-diagnosis.... everything you read says "don't try to diagnose yourself using the internet!" But with a tool like Isabel (and a few others available now) -- I have to ask, "why not?"

Now - please understand - I am not suggesting you can bypass your doctor all together when you have troubling symptoms. Not at all.  That's not an empowered patient approach.

But what I am suggesting is that the tools and support are now available to make it much easier for a patient to learn far, far more about a potential diagnosis, even if it's only to eliminate it as a possibility. That a patient can learn to develop his or her own differential diagnosis, and get enough information online to come to an accurate conclusion, or at least one that's very close. Having done so, that patient can then see his or her doctor and be far more confident about both the conversation, the need for subsequent testing, and even the conclusion.

So here you go: How to Self-Diagnose Using the Internet with a clear nod to Jason and his hard work, and his willingness to share the Isabel system with us patients.

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Agree? Disagree?
Share your experience or join the conversation!


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February 13, 2013 at 11:36 am
(1) Karen Carr Biehl says:

Once I realised the condition I was suffering from was genetic when my children began displaying more of the same symptoms I had and I didnt think my fibromyalgia diagnosis was accurate I began to use google on my quest for an answer.. and I found it,,my diagnosis is currently called Andersen Tawil type 2 with sensory overload and lidocaine resistance,, a potassium ion channelopathy under the umbrella of the MDA and considered quite rare,, but in my opinion rarely diagnosed,, I believe it is a very old disease and with its autosomal dominant pattern of inheritence is probably much more common than currently thought,, my research continues as I am too disabled to work a full time job so I have the time,, people can find their answers.. after my work to figure out what our condition was and meeting Dr. Michael Segal md phd who has a diagnostic program similar to Isabel it took me about 10 minutes to get the same diagnosis it took me over 6 months to discover on my own,,,I am also really amazed by the work of Phillip Hammond md and FDNA.com a company using facial recognition software to identify subtle facial differences that can be indicative of genetic disease,, We are entering an age of inovation unknown before now.. perhaps others wont have to wait 53 years to get an idea of what the actual problem is,, kcb

February 14, 2013 at 2:30 pm
(2) Steve says:


I notice you didn’t insert a link to the Isabel System of products.

Here it is “above”. If you want to publish it. It is very inexpensive.

While I wouldn’t recommend that Patient Advocates use it to help their clients (practicing medicine w/o a license?) It may be a good “self education” tool for advocates to use to help them help their clients ask better questions while at the doctors office.

March 27, 2014 at 4:21 pm
(3) Seth Norman says:

Following hospitalization for a fall, my 83-year-old mother was discharged to a nursing facility where for 12 months she lay crippled, incontinent, dosed with anti-psychotic, antidepressant, and anti-anxiety meds and. She cycled through infection-inducted deliriums, then faded into dementia.
Nine doctors diagnosed her with progressive, irreversible conditions: cerebral atrophy, Alzheimer’s and Lewy Bodies syndromes. All advised she would deteriorate until death.
I declined to accept this and my hope wasn’t blind. In records the hospital had refused to release for four months, I found a neurologist’s assessment of an MRI taken at admission. It read “Possible NPH.”
From the Internet I discovered NPH referred to Normal Pressure Hydrocephalus, a build up of cerebral spinal fluid in the brain. Its symptoms matched my mother’s, so I constructed an appeal for investigation. A neurosurgeon and neurologist refused us; and when a SPECT revealed no Alzheimer’s or Lewy Bodies, concluded she had Frontal Temporal Dementia.
Now Internet sources helped me compare and contrast my mother’s symptoms with those of FTD and NPH. I compiled these in an email sent to Dr. Anthony Avellino, at the University of Washington Medical Center. After examinations, he agreed to perform a lumbar bypass procedure predictive of NPH.
When admitted to UWMC my mother was unable to read, recall the year or move her legs without screaming. Three hours after the bypass she was coherent and free from pain. Three weeks later she was reading the New York Times, The New Yorker and two novels at once. A brain shunt installed in June fixed the bypass benefits. Soon after, a physical therapist declared her progress the most remarkable she had ever seen.
My mother has now returned to her home. She reads omnivorously, manages her finances and enjoys visits from grandkids and friends. She remembers little of her ordeal but insists on believing I “saved” her.
No. It was the Internet.

March 28, 2014 at 12:30 pm
(4) gemdiamondintherough says:

The internet has it’s place, just like any other source of education~!
We have to be accountable for the decisions we make and the provider needs to be accountable for the information they do or do not share.

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