"Misdiagnosis and continued poor case management"

Several years ago, I attended Sir Charles Gairdner Hospital (SCGH) on the advice of a GP after a suspected severe adverse reaction to an immunisation given in medical error.

Whilst still in the Emergency Department (ED), my hospital records show that the on-duty neurologist contacted another neurologist by phone who declared that I had a psychogenic disorder:

 - without a psychiatric evaluation

 - without conducting any new imaging

 - without conducting a physical examination themselves.

This created a domino effect that would include refusal of equipment, services, physical and verbal abuse by SCGH staff and the use of physical restraints during physiotherapy sessions. From the moment the misdiagnosis of Conversion Disorder occurred, I feel the entire management and bedside manner changed completely and continues today.  

I had complete left-sided hemiparesis at the time. I had to learn how to walk, talk, read and write without any appropriate assistance from the public system, namely from SCGH and Fiona Stanley Hospital (FSH).

To this day, my case management is deplorable under the public system because I believe I have continually had evidence of the physical symptoms that do correlate to physical conditions ignored, and actively cited as being caused by mental health conditions that I do not have or experience.

It has taken intervention via the private system to actually receive some quality of life, however, the public system continues to fail in managing my case.

I am seeing a neuro nurse through the Neurological Council WA (NCWA), who identified my symptoms as Autonomic Dysreflexia which only exists in Incomplete Spinal Cord Injury patients, specifically the thoracic region.

I was told that my neuro nurse, and the board at NCWA were recently contacted by FSH to answer why they had identified that my symptoms indeed have a pattern towards a physical cause, and I feel they were vilified for making this diagnosis. It seems that since this occurred, my management under NCWA has gone from symptom management to trying to get me off their books ASAP via the NDIS.

I had contacted the spinal outreach service at FSH for advice on how to manage Autonomic Dysreflexia and an Occupational Therapist replied saying they had contacted my neurologist, which did not help matters in any possible way.

My private neuro physio agrees that my symptoms match a spinal pathology.

I receive Ketamine Infusions as a non-malignant chronic pain patient for central sensitisation via the private system. The ketamine infusions can exacerbate pre-existing neurological symptoms, such as issues experienced with my left eye. An Associate Professor at a medical research institute has been consulted regarding this issue and believes it to be blepharitis caused by Dyspraxia that is revealed by the Ketamine. However, I believe a neurologist at SCGH refused to take any of this on board during a recent outpatient appointment.

I have obtained my private imaging reports from over the years and they show that I actually do have a spinal deformity in the thoracic region in my spine that can go on to cause spinal cord damage and Neurological deficit. I also had ten out of my twelve vertebral discs herniated and spinal stenosis.

A mismanaged paralysis would put strain on a pre-existing spinal deformity.

My functionality is not psychogenic as all physical causes were not ruled out and are now coming to light with strong evidence of being physical in nature. This journey has taken years to unravel with the spinal cord evidence only coming to light recently.

I am tired of advocating for my right to receive the appropriate care under the public system. My simple demands all of these years has been:

 - to receive the correct management by the correct disciplines

 - to have my medical records edited to show the misdiagnosis that has occurred so that my future health care is no longer compromised by the misdiagnosis.

I feel as though I'm treated as if I am mentally ill and that any symptom or anything physical is an emotional manifestation all due to the misdiagnosis of Conversion Disorder. I also feel that any intervention to treat the physical symptoms is seen as interference and the preferred treatment for Conversion Disorder is psychology and physio, of which I have completed many hours of both over the years, with no improvement. I believe this is because it is not the right treatment protocol because it was a misdiagnosis.

I am seeking for my care to no longer be led by the Neurology Department at SCGH, as I feel they refuse to accept any new information regarding my health from other professionals and that my health is at risk as a result.

Currently, I am waiting for a referral to Immunology at SCGH and have had a referral accepted by Neurosurgery at FSH. I am awaiting an initial appointment, however, had anticipated that my spinal deformity was going to be managed by the Spinal Deformity Clinic at another hospital.

 Ultimately, I feel my management within these two hospitals needs review and redelegation, including having my medical records redacted to avoid a repeat of the last six years of, what I feel, has been mismanagement.