Hi, for some reason I cannot paste the links but if you type in Behcets Australia on google a few people have posted on health unlocked about Behcets in Australia. Hope this helps x

You will need to find a rheumatologist and an ophthalmologist if you have any eye troubles. Cardiologist too if you feel it is effecting your heart. Be assertive if you have to be referred through your GP. Keep posting, let us all know how you get on and so we can help. Good luck.

Hi The most important thing to do is to find a Doctor that knows something about Behcets and how to treat it well.

I have found a link to a paper written in 2015 from two Doctors from Adelaide - hindawi.com/journals/ijr/20... You may be able to ask to get a referral to them to see them at their hospital - they at least must have an interest in Behcets. If they cannot help perhaps they can direct you to Doctors that know about Behcets.

There is rare Connect which is a European Rare Disease Community where there is an International Behcets Community see rareconnect.org/en/communit...

If you look on the behcets map of the world see rareconnect.org/en/communit...

You will find two other people living with Behcets in Adelaide. They may be able to help with Doctors/treatments and experience of living with this disease. Contact rare connect and ask if they will send a message to the two people to perhaps get in contact if you feel that would halp you.

Have a look at Rare diseases Australia. May be worth speaking to them about behcets doctors in Australia

Good luck

Here's a Health Unlocked link that will take you to all the posts about Australia in this group:

healthunlocked.com/search/a...

Today I feel really really bad. I feel my vision is missing on my right side and it is making it hard to read. I cannot stand up without nearly passing out. The ulcers in my mouth are so bad I haven't been able to eat for a couple of days. I feel full if I try to eat. I have had a really stiff neck for about 6 weeks and it is getting worse along with the headache in the lower back of my head. Today I'm really dizzy and confused, feel really spaced out. I keep forgetting what I'm going to say and just feel really bad.

Rheumatologust Dr Paul Russo, Chandlers Hill surgery. You will need a referral from your GP, of course. As you probably know, the gap you need to pay between medicare and the actual cost is quiet large, especially the first one. Might be around $200. It might sound a lot but my first appointment was about 1 hour. He was very thorough and listened to everything. Very patient. (Unlike the other private R I has seen).

I have seen a few rheumatologists in Adelaide - both public and private - and Dr Russo has been by far the best.

If you can't afford a private rheumatologist, and you have to rely on the public system, it's hard. The Flinders Rheumatologists have liitle experience with Behcets. Adelaide hospital Rhematologists may be better but unless you live closer to them than Flinders they may suggest you go to Flinders.

Unfortunately here in Adelaide, it seems private really is the only way to go. It was a bit of a shock to me as I was diagnosed in Sydney after a hospital admission to RPA, and thereafter for years saw the rhematologists at the RPA outpatients. I could always get in really quick to see them when needed, and they were excellent. It was a shock when I came to SA and has to wait about 9 months to see a R in the public system.

Dr Russo really listens and is approachable.

Third reply... I didn't read your first post properly.. You haven't been diagnosed yet....

I would still go to Emergency, maybe first thing in the morning (the Opthalmologists usually only work during the day). Its possible that you may end up referred to a Rheumatologst through that if they find uveitis...

If you dont go or dont get a referral to a R.....

See your GP and ask for a referral - either the public system (if you cant afford private) or private - ask for Dr Paul Russo for the private. It takes months (and months) to get in, especially the public. But if you have problems with your sight, your GP should be able to fast track the private referral.

Have you seen a GP about your sight?

Probably not much help but I have found a fantastic rheumatologist in Melbourne . He has also worked in the Behçets centre in London so familiar with the disease . He spent two hours with me at my first consult! His name is Tim Godfrey and he works out of Cabrini hospital. He also offered to devise a plan and pass it to a rheumatologist closer to home ( I live 1hour away) so not sure if that would help you?

Dear Nimble Cricket, At times health issues build and build until it all becomes too much. I hope you have a special friend or family person to help you at this difficult time.

My daughter has the eye disease associated with BD and ophthalmologist doesn't muck around when they know that its all related to BD. She was being monitored twice a week for 3 months. Although we were 1.5 hrs away from the hospital the eye sight can go quickly. IV medication helped. With your other symptoms I recommend take photos and document the date and all different areas you are seeing and feeling the pain. This will help the Rheumatologist obtain the correct diagnosis. It is very difficult to catch the inflammation markers being elevated in BD. My daughter was in a great deal of pain, stress and 17 tablets a day, until 4 years in to having BD the DR's caught her inflammation markers higher that the machine could go. That was all they wanted to see. I think it makes them feel re assured that they are on the right path. It took the Dr's 23 yrs to diagnose me, my daughter 4 years and my son only 2 months. It can be hereditary but I know this doesn't help.

Even if it isn't BD seek help, chat to see someone who can help with managing the pain you are in. Vent your anger and frustration as it helps to get it off your chest. We are all listening as we have been through it at some time in our lives. Good Luck xx

Good Luck.

Hi,

I have just stumbled across your post. I have recently been diagnosed with Bechets and live in Adelaide too.

How are you going with your treatment?

I have been seeing the rheumatology team at the Royal Adelaide Hospital, they are fairly new to behcets but they are fantastic. I really hope you are receiving some treatment, are feeling better and please feel free to msg me if you would like to chat.