"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…"
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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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
Brisbane specialists
Started by kelly webster. Last reply by mazinoz Dec 8, 2019. 7 Replies 0 Likes
Hi there. It took 10 years to get my daughter diagnosed with EDS by a geneticist. Apart from the constant pain and subluxations she is starting to get bladder and heart issues. Do you have any…Continue
Airway affected by voice box
Started by Janet Jordan. Last reply by Julie Downey Aug 7, 2019. 5 Replies 0 Likes
Hi has anyone experienced with their EDS their voice box closing over and limiting airflow into lungs.I found this out as I was admitted to hospital coughing up blood. And as not all Dr's are versed…Continue
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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."
"I have EDS. Disloyalty I strongly believe is created by excess histamine from over active mast cells 'Mast Cell Disorder'.
Telfast twice a day kids will change your daughter's life out of site. Then once the EDS flare up calms down,…"
"No and it starts when you are born. You need to try and work out what is causing the issues and stop her eating it. This will create other ongoing issues in her body if you don't."
"I don't know about a procedure. But have seen a picture of a hip brace in Dr Brad Tinkle's book on EDS & HMS. It looks like a band that wraps around the leg and hip to help hold it in place. Try to sleep on back with pillows under…"
"Know what you mean about rare. Our family now diagnosed as mitochondrial MYOPATHY. But we inherit it as a dominent pattern. NORD want to study our family as it is unusual. Diagnosed MM by skin biopsy."
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