Guest mattgreen Posted April 8, 2013 Report Share Posted April 8, 2013 Manfred Jurgensen is an Australian academic and writer. Listening to him in interview on the radio he dropped that he suffered 'primary dysautonomia' a disorder affecting 'his ANS'. He also mentioned he requires bi-weekly 'infusions' as management but did not expand on this in the interview (or another I found) only that it is provided in hospital. One can only guess to what he is referring to. IVIG? Some other immunomodulatory drug?This is a man in his 80's who travels and lectures frequently including overseas and is a prolific publisher of work. I guess I am just annoyed as I am in considerably worse shape (can't travel in a car let alone an aeroplane!) and have been told the only treatment is SSRI/mestinon combo regardless of any results from autoimmune or neuropathy tests. Considering we live in the same City I'm bummed. Where are my infusions?! Would love to know which doctor is treating him.Has anyone come across specifically the 'primary dysautonomia' tag or can guess at what treatment he may be receiving? The interviews are below. I'm also a huge fan of this guy and hate sounding bitter. I am glad he is having successful management of his disease.http://www.abc.net.au/radionational/programs/latenightlive/through-an-immigrant27s-eyes/4501888http://www.abc.net.au/radionational/programs/latenightlive/through-an-immigrant27s-eyes/4501888http://www.abc.net.au/local/stories/2013/02/04/3682659.htm Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 8, 2013 Report Share Posted April 8, 2013 I'm in Australia and I will find out. Quote Link to comment Share on other sites More sharing options...
Guest mattgreen Posted April 9, 2013 Report Share Posted April 9, 2013 Thanks Rama Quote Link to comment Share on other sites More sharing options...
blueskies Posted April 10, 2013 Report Share Posted April 10, 2013 Thanks rama, I'm in Sydney Aus and I'd like to know too. blue Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted April 12, 2013 Report Share Posted April 12, 2013 Do you all read Living with Bob (Dysautonomia)? Australian blogger who is currently blogging about her first go at IV therapy. http://bobisdysautonomia.blogspot.com/ Quote Link to comment Share on other sites More sharing options...
ShakeyTheOwl Posted April 12, 2013 Report Share Posted April 12, 2013 Her blog is pretty amazing, and knowledge with her medical background. Her humor is great, good to laugh in midst of dealing with dysautonomia. She recently received award for her blog, and acknowledged by her specialist for patient advocacy and awareness. Quote Link to comment Share on other sites More sharing options...
Joann Posted April 12, 2013 Report Share Posted April 12, 2013 CarrieJessica,Wow. It sounds like it has really helped her. I know from reading some of her posts that she is really ill. She has the iv for 2 months, if it helps her, i wonder if they will be able to continue after the two months? Quote Link to comment Share on other sites More sharing options...
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