"https://metronorth.health.qld.gov.au/wp-content/uploads/2019/03/ghq-eds-factsheet.pdf https://www.ehlers-danlos.com/support-groups-australia/…"
EDSAUS - Ehlers Danlos Syndrome Support in Australia
Aussie support for those with Ehlers-Danlos Syndrome and their families
This group is for Aussies who have Ehlers-Danlos Syndrome and their families, a place for support, information, compassion and understanding
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Updates?
Started by A.C.. Last reply by mazinoz Apr 30. 1 Reply 0 Likes
Hi,I hope everyone is keeping safe and well in these difficult times. :)I was wondering whether there is another website for EDS support in Australia at the moment? This site has been a little quiet…Continue
Sudden long distance sight problem in one eye
Started by tell johnson Jul 14, 2020. 0 Replies 0 Likes
I have ehlers danlos classical and have noticed a sudden loss of long sight in my left eye. The left eye is now very blurry and i am now needing to wear glasses. I have seen an ophthalmologist who…Continue
Please help Bundaberg
Started by Tracey. Last reply by mazinoz Dec 8, 2019. 2 Replies 0 Likes
I am looking for a gp that can diagnose eds in the Bundaberg area. Can anyone help Continue
Actually getting recommended Pain Meds in Brisbane?
Started by mazinoz Dec 8, 2019. 0 Replies 0 Likes
Has anyone managed to find a GP or specialist in Brisbane or Qld even who will actually prescribe either Tramadol or Palexia? Both work well for me but I get the "you're an addict, hypochondriac,…Continue
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Updates?
Hi,I hope everyone is keeping safe and well in these difficult times. :)I was wondering whether there is another website for EDS support in Australia at the moment? This site has been a little quiet recently, and I was thinking perhaps EDS-AUS has moved to a different online location. Any updates?Also, does anyone know the contact address/P.O. Box for EDS-AUS? I'm currently working on a support network project with the GSNV, and cannot seem to find a physical address listed. Any information…See More
Sudden long distance sight problem in one eye
I have ehlers danlos classical and have noticed a sudden loss of long sight in my left eye. The left eye is now very blurry and i am now needing to wear glasses. I have seen an ophthalmologist who has ruled out anything obvious but i am concerned it could be related to my ehlers danlos. The ophthalmologist was not a student of ehlers danlos and was not helpful at all. Am also wondering if it could be related to impinged nerve in the cervical base of the neck caused by my flaccid neck muscles. …See More
"You could try showing your current GP this article:
https://www.ncbi.nlm.nih.gov/books/NBK1279/
or ask to be referred to a rheumatologist or geneticist for assessment.
GP's 99% of the time are hopeless at diagnosing it and you will have to…"
Actually getting recommended Pain Meds in Brisbane?
Has anyone managed to find a GP or specialist in Brisbane or Qld even who will actually prescribe either Tramadol or Palexia? Both work well for me but I get the "you're an addict, hypochondriac, neurotic, malingerer" routine 99% of time. Moral indignation x 100!NSAID'S work but have hiatus hernia due to EDS/HM and 2 -3 bowel movements / day despite FODMAP diet. Trying turmeric but not sure it has any benefit over ibuprofen. Cutting out dairy, gluten, caffeine helped. Have cheese, yoghurt,…See More
"Sorry for reviving old thread.
Is there any chance he treats as well? Does he prescribe Tramadol or Palexia at all? Or is he abhorrent to using pain meds? Latest on these: https://www.ncbi.nlm.nih.gov/books/NBK1279/ includes cannabinoids.
Our…"
"Hi Kaitlyn, you were so kind and messaged me about my daughter. Your message went to spam so apologies for the delay in replying. You poor love i have just read what your dealing with and in comparison my daughter is very lucky. I do hope you are…"
"Hello Liz!
I have been suffering with symptoms of VEDS for most of my life but I also have hyper mobility and symptoms associated with HEDS for about the last decade or so. Has your 23 year old since gotten tested at all? Does she have any…"
"What kind of doctor should I get a referral to, who diagnoses autonomic dysfunction. My GP is clueless"
"Hello,
Just wondering if anyone sees Sydney Rheumatologist - Neil McGill and your thoughts please.
Thank you."
"I had breathing issues and was tested and dx with "vocal cord spasm". Cold air makes me cough, swallowing tablets can be hard, and hard to not choke on food and drink sometimes. Also known as 'hyperventilation syndrome'"
"Also, be careful when taking bicarb!! At least two hours after taking any other medicine. Bicarb contains chemical compounds, hence it can help but also interact with other medication badly."
"Hi Janet.
Try taking B1 and B2 histamine blockers I.e. Telfast and Ranitidine. I was taking up to 800mg telfast when I was in flare up.
Also anxiety can cause your throat closing issues, jaw, depression etc. Think about your symptoms and I assume…"
"She will have 'Mitral Valve Prolapse ', most likely. Heart specialist, bladder issues are muscle related and obviously flexible connective tissue. Hip replacement if bones are damaged. Otherwise, muscle condition and BPC 157 for healing…"
"BPC 157 or Body Protecting Compound 157. You inject it twice a day into your injuries. It helps you heal, you only get it from a geneticist. I use it for 1 year now and I'm walking again (40 y/o male), not far but still walking.
Do your…"
"Dismotality or poor digestion, sorry auto correct."
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