Ask The Expert - Functional Neurological Disorders & PPPD

Comments · 24

• KA

  @kavitaahuja4796 · 1 year ago

  I m glad that all my symptoms got a name after 13 years ...I m on psyactory medicine since then..with no major relief....may be I can taper off them now..Thankyou doctor you have very analytical and empathtaic approach..God bless you with tons of blessings...you have me a ray of hope...thankyou so much for so clear description.....

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• PO

  @pollymoyer4791 · 1 year ago

  In the UK PPPD is considered to be a diagnosis that some patients dread and some doctors consider it to be a &apos;wastebasket&apos; diagnosis or one which patients should reject. &nbsp;Patients didn&apos;t like, understand or use the terminology and wanted the nomenclature simplified because it was thought that this could, potentially, improve outcomes. &nbsp;I&apos;d like to know why that didn&apos;t happen in a timely fashion and also why all the cautionary tweets sent from professionals (which I have sent to Tim Hain) were ignored. &nbsp;There were and are many issues with the citations used in the criteria paper (Jon Stone was kind enough to say that &apos;they could have used a better one&apos; regarding the one from the 1830s but that begs the question &apos;why didn&apos;t they, then?&apos;) and Staab&apos;s fake case studies didn&apos;t help either. &nbsp;There are a host of other issues such as people being diagnosed with PPPD on the basis of a second episode alone, sometimes before they&apos;d even walked through the door. &nbsp;Some people with MdDS had their accurate diagnoses changed to pppd via reissued clinical letters when no further consultation, history taking or testing had taken place so some data about MdDS got lost. &nbsp;As far as I can tell the FND Society made no effort to capture the many misdiagnoses (Prof Staab said my comments about it were &apos;detailed and helpful&apos; but nothing seemed to change) reported by people labelled with PPPD initially and they found it hard to get PPPD redacted from their notes once they were re diagnosed. &nbsp; The over promotion of PPPD may have resulted in diagnostic inflation and some doctors and patients were also concerned by diagnostic overshadowing and the stigma associated with having a &apos;functional&apos; label &nbsp;<br>As such I am calling for a &apos;controversies re pppd&apos; paper so that this all gets a good airing (Prof Hamid from the AVMIB knows most of my concerns about it and those of other patients and professionals). &nbsp;I would like to see this closely followed by a &apos;care gaps and recommendations&apos; paper, like the one done for people with vestibular migraine, fairly recently. &nbsp;I also found this update about vestibular migraine very interesting DOI: 10.1097/WCO.0000000000001257 and thought the author&apos;s comments about FND were both timely and apt.

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• VA

  @valred0507 · 1 year ago (edited)

  I&apos;ve been totally left without a plan. &apos;Ask your GP for CBT&apos;, that&apos;s it! I got a text from my GP for Talking Therapies. The state of the NHS, it&apos;s hopeless... :(

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• JE

  @jean6460 · 7 months ago

  Thank you

• KA

  @karenmizrach6351 · 1 year ago

  Great presentation. Thank you.

• BA

  @barbarafiser4873 · 1 year ago

  Interesting but does not explain causes and latest treatment for a patient.

  4

• БО

  @Божидар-з7ф · 1 year ago

  Can you fully recover one day and not have it anymore or you must manage it your whole life and live that way 🤮🤮🤮

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• DE

  @DebbieSimon-g2t · 1 year ago

  Could you please help me? I am diagnosed with FND. &nbsp;I need a direction for care. &nbsp;I was sent to a mental health sociologist and after two months have just discovered she didn&apos;t even know my disorder or even what FND is? &nbsp;I am lost

• PP

  @PPPD-vertiges · 1 year ago (edited)

  Thank you so much for this and all you do for people with FND. <br>I am a founder member of the French patient association ADeV, affiliated with the Veda. I am British but live here in France and work as a mind body therapist. We are currently working on a clinical trial to integrate this approach into the multidisciplinary treatment plan for PPPD. <br>I have PPPD myself and have a YouTube channel in French to help and inform other patients. <br><br><a href="https://youtube.com/@pppd-vertiges?si=DoQJz9j9LK7vXszj">https://youtube.com/@pppd-vertiges?si=DoQJz9j9LK7vXszj</a><br><br>🙏🙏🙏🙏🙏🙏