Transverse Myelitis
Transverse Myelitis is a neurological disorder caused by inflammation across both sides of one segment of the spinal cord. Researchers aren’t sure of the exact cause and as with many disorders of the spinal cord, there is currently no cure.
Our Story
My husband was admitted to hospital in Feb 2007 after having a reaction to the flu vaccination he had received the day before. He was hallucinating, feverish and the injection site was severely swollen, in fact the upper right arm was swollen like a football and very painful.
The Drs first thoughts were cellulitis and in the proceeding 12 - 13 weeks of hospitalisation as more symptoms he was diagnosed with atypical Guillian Barre Syndrome. This was a terrifying moment .. he was transferred to another ward so he was near a ventilator.
Since then they even queried Multiple Sclerosis. It was a pretty scary time for all of us and so frustrating for The Man.... some days it still is. The worst day was when he was moved wards so he would be closer to a ventilator if needed which was also the same day a nurse flushed his cannula and caused a clot that went from his inside elbow to his wrist. SCARY STUFF
The last 4 years have been spent with no medication to help the symptoms and to make his life a little more comfortable. Because this WAS caused/triggered by a flu vaccination the medical professionals have been hesitant to make a diagnosis.
It has taken until July 2011 to be given an actual diagnosis of Transverse Myelitis.
Immediately after the event he was referred to a Gerontologist... YES.. a 41 year old man was sent to see someone who studies the affect of aging. THANK GOD because this Dr was the first one to stop and listen to the person and not see him as a patient. She pointed out that his file went so far as to say it was all in his head and she didn't believe that.
Can you imagine hearing that the Dr's who are treating you believe you are bunging it on. You are pretending you can't walk, are cramping, have none or limited sensations etc etc. That really bugged us for a long time.
She referred him on to a Neurologist who at first glance told us The Man, in his opinion had a rare neurological disorder called Transverse Myelitis and the blessing is he is more knowledgeable about TM in Brisbane than pretty much any other DR... and that is because he treats a woman who knows more about it than him and she educates him...LOL This wonderful lady is now someone we know we can talk to at any time and she will lead us in the right direction. Every step of the journey we have had small blessings...
We've had some times we could have done without also I might add.
Anyway... I'll be adding some links here for TM. Places that have helped us gain some understanding of where he's at.
Spinal Injuries Assocation
Qld's peak body for for people with a spinal cord injury, including people with the late effects of polio, and people with Transverse Myelitis. The people within the Association have been such important sources of information and support.
Transverse Myelitis YouTube Channel
All videos from 2001 - 2010 Rare Neuroimmunologic Disorders Symposiums
The Transverse Myelitis Association
The organization advocating for children, adolescents, and adults with the spectrum disorders of acute disseminated encephalomyelitis, neuromyelitis optica, optic neuritis and transverse myelitis.
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