As far as I know, no list exists. This means we cannot advise people getting their first episode of Acute Myelitis. So I have written the following letter to neurology groups and associations around Australia to see whether we can devise a list of people with interest and perhaps some expertise and experience.
We also need to find out whether any research is going on Australia, in support of what seems to be going on in the US.
Don't hold your breath, but I will keep this blog posted with any useful information I can discover...
"Dear Sir or Madam,
I have suffered from Transverse Myelitis since 2009. I was diagnosed at Royal Brisbane Hospital and had a month’s rehabilitation at the spinal unit at Princess Alexandra Hospital, also in Brisbane. I had 3 early home visits from the Spinal Outreach Team at PAH, but have not had any follow up for the last 5 years.
As a doctor, I have read everything I can about TM and rehabilitation, and done my best to apply what I can. I am slowly deteriorating, but at 71, I probably have to accept that.
I am part of a small national group of TM sufferers trying to get the best therapy for our members, and particularly for newly diagnosed sufferers, as well as for children with TM. It appears that recent research from the US is largely unknown in Australia. Some of our members have been to the US for therapy and rehab in the absence of clear pathways to best practice in Australia.
Is there a group of neurologists with members in each state and territory who have any interest in, and /or expertise in Transverse Myelitis?
Is there, to your knowledge, any emerging research into TM being done in Australia?
Our group would like to build a useful list of possible consultants and teams across Australia, to get the best care and the quickest access to high quality and knowledgeable care. Is there any way you can be of assistance.