A Remarkable Thing Has Happened...
Ron Payne
From: Chris Carey <chris...@rocketmail.com>
Date: Mon, Mar 28, 2011 at 11:46 PM
Subject: [odspfireside: 36073 ] A Remarkable Thing Has Happened...
To: odspfi...@googlegroups.com
|
Hello Everyone:
Last fall I told you all about my story of illness. How as a university student in Ottawa nearly ten years ago I became seriously ill and that ever since I've experienced constant sensations of “pins and needles” on my face and head that distorted my thoughts and caused significant sensory pain. I also explained that these sensations caused disorientation and confusion, and fleeting numbness in my extremities, especially on my right side. I told of “falling through the cracks” of the healthcare system, of being diagnosed with “brain tremors,” and then agoraphobia and panic disorder, and then finally, “conversion disorder.” I went from being a successful student in 2001, to a gift store cashier and then to a newspaper carrier and low-wage janitor. Since 2001 two psychiatrists, two neurologists, and two neuropsychologists have assessed me. Some of these services I had to pay.
From day one of this illness, I have confronted constant indifference in the medical community. Although I think most doctors are well intentioned, they’re also human and often misguided, especially on issues related to mental illness. Moreover, once a patient is labeled as psychiatric that patient appears to lose credibility in the eyes of medical professionals. Its as though patients with psychiatric illnesses can no longer be trusted to accurately interpret and report their own symptoms. This has devastating consequences for patient outcomes and for the whole system.
In 2009, I began taking correspondence courses in psychology at Queen’s University as a way to learn as much as I could about the brain and how it functions. I knew my symptoms were caused by a neurological condition and that I could only rely on myself for answers. Here at fireside I’ve even compared my experience to that of Chloe Atkins: now an University of Calgary professor who was wrongly diagnosed with somatoform disorder. She nearly died in a Canadian hospital before being properly diagnosed and treated.
Well, several weeks ago after attending the Queen’s InvisAbilities event that Louise and I both discussed here, I went looking again for answers to my own medical mystery – and I found what I’ve spent nearly an entire decade searching for...It seems as though I have what’s called, neurosarcoidosis.
Neurosarcoidosis is a rare autoimmune disease characterized by microscopic granules that form on cranial nerves observable only by surgical biopsy. This explains why routine testing failed to capture any abnormalities. If enough of these granules form they can interfere with normal brain function and cause significant sensory pain and thought distortion. This condition can have sudden onset, or develop gradually. It produces symptoms that in every way mimic my own. Apparently neurosarcoidosis only occurs in those people who possess a certain genetic predisposition; my maternal grandmother has alopecia universalis, another type of rare autoimmune disease
In the last few days I’ve done considerable research on this topic and frankly, I’m feeling overwhelmed and very emotional. I never imagined that after nearly a decade-long quest for answers that this would happen now?
Anyway, I just wanted to share all of this with everyone here. Thanks for your continued support! http://en.wikipedia.org/wiki/Neurosarcoidosis
Chris |
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