1. Do you need doctors if you have
Google?
• Janet Hall MB.ChB FRCGP General Practitioner
(Sophie’s GP)
• Clinical Advisor NHS England (Kent and
Medway Area Team) Performance and
Revalidation
• Sophie Tate (aged 27) patient

2. SELF-DIAGNOSIS?

3. Plan of talk
• Patients using Google and the internet in
general
• The story of one young woman from the
doctors’ perspective
• Her story from her own perspective
• How the diagnosis was reached
• What lessons to be learnt
• Conclusions about usefulness of internet for
patients

4. Advantages of patients researching
their symptoms
• It encourages self education of
patients who can the have more
useful discussions with doctors
• Doctors can encourage the patient
to use the more reliable sites
• (Almost) everybody uses the internet
for searching and why not medicine?

5. Disadvantages of patients using
internet
• Some patients become more anxious
as extreme cases are often
described.
• False hope may be given when
‘miracles’ achieved by ‘alternative’
medicine
• Information overload with confusion

6. Is the internet any use in diagnosis?
• BMJ 2006 Tang and Ng googled 26
case histories published in the New
England Journal of Medicine without
knowing the correct diagnosis using
5 symptoms
• They were correct in 58% cases

7. Inspiration for this talk
• Sophie
• ‘Patient journeys’ published in BMJ-
100 in the past 8 years-and the
consequences for the patient, their
family, friends and health
professionals

8. The story of Sophie
Part 1
The doctors

9. Past Medical History
Endometriosis and polycystic ovaries (extensive
investigations before correct diagnoses reached
– after extensive internet research by patient)

10. Family History
Father has auto immune thyroid and
liver diseases
One sister has epilepsy

11. Sophie’s symptoms
acute and severe
‘Attacks’-? 50 in 18 months
-contorted facial movements and
various weaknesses plus an
assortment of other symptoms

12. Sophie’s symptoms (some)
Either continual or intermittent
• Lump in throat -only able to talk when head turned to
the right
• Numb patches on body and odd mottling of skin
• Small infrequent electric shocks to right cheek
• Dizzy on standing and confusion
• Sharp pains to various parts of the body close to joints
• Poor vision- like focusing a camera lens
• Chest pain, waking gasping for air, tachycardia (120-
150) and low BP (105/49)
• Excessive reaction to cold with symptoms much worse
in cold weather

13. Photos of Sophie
• Taken during periods of of being unwell

14. Facial spasmfaFf
Facial spasms of Sophie

15. One foot cold and the other hot

16. Rash on feet

17. BLOTCHY RASH HANDS

18. Blotchy leg

19. Change of colour in thehands

20. THE FACIAL SPASMS

21. Sophie’s medical journey 1
• 12 December 2011 to A and E
• Sudden onset dysphonia September continuing
for 4 months. Advised to see neurologist.
• Dec 2011 to Jan 2012 saw neurologist and a
head and neck surgeon; numerous investigations
• 21 Jan 2012 urgent admission to hospital
weakness in right arm and both legs.
Thrombolysed after video consultation with a
neurologist, admitted to a stroke unit. Further
attack witnessed by nurses. Improved (including
voice intermittently), BUT discharged with a
zimmer frame after 5 days

22. Sophie’s medical journey
2
• 1 day later returned as emergency.
reduced power in right leg 3/5, hyper
reflexia on left , double vision in
horizontal plane and poor co-ordination
in finger/nose test
• Diagnosis functional neurological
disorder-definitely NOT a stroke

23. Sophie’s medical journey 3
2012
 Feb chest pain seen in A and E
 Feb vascular surgeon
 Feb cardiologist
 Feb vascular and endovascular surgeon
 Feb ENT consultant
 April psychiatrist
 June Lupus clinic
 August haematologist

24. Sophie’s medical journey
4
• September 2012 Rheumatologist
• November 2012 Neuro-psychiatrist
• December 2012 Gynaecologist
• February 2013 Neurologist
• June 2013 Professor X -the end of the journey!

25. Investigations
• Numerous blood tests including anti-
phospholipid antibodies, cryoglobulin screen,
porphyria screen
• EEG
• ECG x 3
• MRI scan head and neck x 4
• CT scan x3
• Barium swallow
• Ultrasound x 3
• Doppler neck
• Nasendoscopy x2

26. The doctors’ diagnoses
• Functional neurological disorder
• Migraine
• Anxiety
• Raynaud’s (Primary)

27. Doctors’ comments
• “I cannot think of an organic lesion which would
cause these symptoms”-many doctors
• “Thrombolysis was a placebo”
• “Suggestions to have CBT, osteopathy,
hypnotherapy, speech therapy, physiotherapy
• “You will not get better unless you stop all
medication or stop seeing doctors”
• Only one doctor (a psychiatrist) said “no it is not
anxiety, you are not mad or making it happen in
your brain”

28. Sophie’s personal journey
1
• She wrote a Blog called “The diary of a
hypochondriac”
• “If you are ill constantly and seem to always
have your brain on pain and discomfort that’s
making your life very difficult you begin to feel
that perhaps you are a hypochondriac or
what’s worse that other people see you as
one. Whether you are or not, you still feel the
pain”

29. Sophie’s personal journey
2
• 26 years old and many stroke like episodes +
numerous unexplained symptoms
• Some clear cut medical signs.
• Her experience with doctors was almost
universally bad (NHS and private)

30. Sophie’s personal journey
3 Her quotes
• “I have never been in a room with such an arrogant
self-absorbed prick”
• “Consultants pass me round like a hot cake assuming
it is not their problem but they’ll happily take their
fees from BUPA”
• NHS hospitals washed their hands of me a long time
ago and all I have got from the Private Sector is a
hefty dose of radiation”
• “These doctors are so strange, depending on their
mood they seem to discount another medical
opinion if it does not suit.”

31. Sophie’s personal journey
4 Her emotions
• “It’s making me sad, just lost. None of it makes any
sense”
• “My stupid body. I want it to work better”
• “All I want is my life back. A job, a partner, maybe even
a family. Definitely a cat. I hate being a burden to my
parents at 27 years old”
• “Just been crying and crying”

32. Sophie’s personal journey
5: The internet:
Hours Googling symptoms and researching various
conditions on internet
Using sites such as Healthunlocked.com
Showing the photos on the blog . Replies including
one “Have you thought about Hughes syndrome?”-
Numerous tests for this had always been negative
or faintly positive (non significant)

33. Sophie’s personal journey
6
• June 2013 email from Sophie to Professor
Khamashta at The Lupus clinic sending the photos
• Immediate appointment and subsequent
diagnosis of sero-negative Anti-phospholipd
syndrome
• Started a trial of Clexane and aspirin with almost
immediate improvement of symptoms

34. Anti-phospholipid syndrome
(Hughes syndrome) Diagnostic criteria
• Clinical evidence of vascular thrombosis or
complications of pregnancy such as recurrent
miscarriage or severe pre-eclampsia
PLUS
• Laboratory criteria positive tests 12 weeks apart
Lupus anticoagulant, anticardiolipin antibody (high
titre) or anti-b2-glycoprotein 1 antibody
• (minor sign livedo reticularis)

35. Sero-negative antiphospholipid
syndrome
• Hughes and Khamashta 2003 BMJ described condition of
sero-negative APS (20 years after original diagnosis of APS)
• 2012 Khamashta et al published in Ann Rheum Dis paper on
clinical manifestations of SP-APS and SN-APS. No significant
differences in vascular events in the 2 groups
• August 2013 Personal communication from Professor
Khamashta ”Less than 1% of cases of APS are sero-negative”

36. Lessons to be learnt
• Do not jump to the conclusion that an illness is functional just
because you do not understand what is going on. Use term
‘medically unexplained symptoms’
• Work with the patient when they bring information including
photos to the consultation. Listen carefully.
• Do not diagnose a psychiatric illness unless the patient has evidence
of a mental illness. Most patients are anxious when they see a
doctor.
• If the tests are negative and there is good clinical evidence think of
the possibility of a sero-negative diagnosis (eg rheumatoid arthritis)
• Ensure your notes and letters are accurate.

37. Why did the diagnosis take so long ?
• Sophie annoyed the doctors because she had
done so much research herself
• The doctors were all too specialist
to think ‘outside of the box”
• They took more notice of the test results than
the clinical evidence and some were biased
• Important evidence was not acted upon-
original diagnosis of stroke, Raynaud’s , livedo
reticularis, research papers of Hughes and
Kashmata

38. Conclusion