PLEASE HELP

HI, I live in Adelaide Australia. I have lived with debilitating symptoms for the past 15 years. I have just fount Behcet's Syndrome which I believe can now answer all my symptoms. Does anyone know of a doctor in Adeleide that is familiar with Behcet's?

I need some help really soon, my heart does not feel good and my mouth ulcers are burning my mouth so much I cannot eat and have lost way too much weight (also I cant eat because of the abdominal pains). Also I am now getting lots of neurological symptoms.

PLEASE HELP ME FIND A DOCTOR THAT CAN HELP.

32 Replies

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  • 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

  • Thankyou sooo much. I will go back to my GP and ask if she can refer me to either of the authors. How would I find the 2 other people in Adelaide?

  • You can join Behcet rare connect rareconnect.org/en/communit...

    Once you have joined let me know and I will ask the people who run the site for help to connect with the two people in Adelaide.

  • I have joined rate connect my username is sarahwinter. I tried to post a question yesterday but the site wasn't working. Any help would be greatly appreciated.

  • Thanks Richard, one of the Dr's consults near me I hope I can get an appointment sometime soon.

  • 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.

  • If your vision is missing from one eye, i suggest you go to the Emergency Room of Adelaide or Flinders. If you have been diagnosed with Behcets and have that level of problem with your eyes, you should see a Ophthalmologisr as soon as possible.

    When i waslast at Flinders, the Ophthalmologist there was the one who told me that if ever I had a flare up with my eyes, go to the ER.

    You could go see a GP and ask them to refer to an O, but they have to say it's urgent. Even then you might have to wait a week or two....

    Best go to the ER dept of a major hospital.

    My current O reads me the riot act if I dont get on top of things immediately. The risk is permanent eye damage.

  • 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?

  • Really good advice about seeing someone at A and E for your eyes as soon as possible. Advise them that you may have Behcets.

  • Hi Richard, thanks for your advice. I have been to the emergency department and I feel they just think im psychotic. I keep going to dr after dr and no one can find anything wrong with me and they all say it is anxiety. I have all the symptoms of Behcets but no one has heard of it and no one believes me. I am adopted and all i know is my birth father died suddnly at age 44 after being sick for a long time. No one knew what he was sick with. I am now geting lots of neurological symptoms and am getting scared that if i can find a dr to believe me soon i will be dead.

  • Hi

    So sorry to hear you are having a hard time.

    Quite a few patients are treated as though they are psychotic.

    There are no tests to show that you have Behcets

    Quite often all blood tests come back normal

    Do not be put off by Doctors not believing you.

    You just have to find a Doctor that knows something about Behcets. Keep asking. Don't give up.

    I can send you some medical papers to give to your GP or a hospital Doctor which explains the symptoms and treatments that are available.

    Write down a list of your symptoms. Take photos of your ulcers when you have them to show the photos to the doctor.

    Do you have an email address I can send the documents to

    Regards

  • Hi I went back to the ED today and for the first time a dr looked into my eyes and said he couldnt see any problems. I will go back to my GP again. I feel as if no one believes how sick i feel at the moment. I would appreciate any info you can send me that I can show her. My email is sarahjwinter75@gmail.com. Thanks again.

  • Hi again,See if your GP will refer you to a Rheumatologist. As I said above, of you can afford to go privately (at least until you have a diagnosis), get a referral to Dr Paul Russo.

    If your GP will not give you a referral, go to another GP. Then another if necessary. Even if it isn't Behcets, it does not hurt to have it ruled out.

    I know what it is like not to be believed (I had a pulmonary embolism in a rehab hospital and the nurse refused to believe there was anything wrong with me, and that was just one of the times I had that kind of thing happen). Just keep pushing. Go to as many GPs as it takes to find one one takes you seriously.

    Have you had blood tests that check your inflammatory markers (C-reactive protein and ESR)? A GP should at least do that. If you havent, I would recommend you ask to get them done in the first instance, and ask for a print of the results. But ask for a referral to a Rheumatoloigist either way.

  • I have a referal for a Rheumatologist but cannot get in for 6 weeks. I have asked to go onto the cancellation list so I can only hope the appointment is sooner. Thanks

  • Can i ask who or where you have been referred to?

  • Hi, They said when I went the ED the other night they had checked for inflammatory markers but didn't find anything. I'm not sure what they checked for. Today the pain in my teeth and face is quite bad. I'm really dizzy and my vision is worse. If I go back to the ED again I'm pretty sure they will do a psych assessment. My heart feels as though it is going to beat out of my chest. I also woke up with really bad lower back pain. I have had bouts of this before but xrays showed nothing.

  • Hi again

    You said when you went to the ED a doctor looked at your eyes. Was it an Opthalmologist? Did you get drops into your eyes that stung, and made your vision a bit blurry before the doctor looked into your eyes with a machine - looked right at the back of your eyes? He/she would have told you to look left, right, up, down....?

  • No drops or ophthalmologist, just a DR with his light. I am pretty sure they have now written me off a psychotic. I have also had a pain in the left side of my face, from above my eye to chin and around to behind my ear. It has been getting worse for about 2 weeks. At 6:00 last night I was in so much pain Iwent back to the ED. They said they couldn't do anything no matter how much pain I told them I was in. They gave me 10mg oxycodone (which didnt do anything to relieve the pain) and literally kicked me out at 9:30 and told me to go to my GP the next day. At about 10:30 a lump started growing on the roof of my mouth. I was in agony with a capital A. It kept getting bigger until it popped at 4:15 in the morning. I feel like my whole jaw and sinuses are infected. All my teeth are loose and really painfull.

  • Not sure how I can have such a bad infection with no swelling (except when it burst) and without a temperature it was 36.9 at the hospital.

  • Can i ask who or where you have been referred to?

  • 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?

  • Thanks. I have considered travelling interstate to get help but I will see if I can wait the 3 1/2 weeks.

  • Not 3 1/2, actually 5 1/2 weeks.

  • 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

  • Hi, thank you all soo much. Given all your advice I have been pushing really hard and was finally given a referral to see a physician. She has admitted me to the Memorial Hospital Nth Adelaide. I have been here for 4 days for investigation. I also saw an opthlamolgist last week (had to cry on the phone to get an appointment). Found ot I have lost about 50% vision in my right eye and 10% in my left. She was pretty definite it isn't Behcets. But my guess is she has never seen anyone with Behcets before. Gave me some Glaucoma drops and said come back in 3 months. My visìon only started to go about 4-5 weeks ago and I think 3 months is too long for a review. Having a mri on my neck tomorrow, I'm hopefully this shows something. Thank you all again. Sarah

  • 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.

  • Hi Gibbies, well it has been an interesting couple of months. I have seen quite a few doctors and am stil waiting for test results. I have been told they do not think it is Bechets although I do have many symptoms. I have an initial diagnosis of Ehlers Danlos syndrome, and Raynalds syndrome. But the Physician I have seen said there is a lot more going on in my body and suggested it may be lupus. My mouth ulcers have settled down at the moment but the vaginal ulcers have kicked off to take their place. My sight has been ok for the last 3 weeks. I saw an opthlamologist who said she couldn't explain why I have vision problems that come and go. I hope your feeling ok, dealing with a hidden illness can be very frustrating. It was my GP who suggested Bechets based on my symptoms but the rheumatologist I saw didn't think so. I have since read some lupus symptoms and they do seem to overlap. Untill I have been given a firm diagnosis I cannot receive any treatment. Good luck with your treatment, I saw Assoc Prof Julian Neil (rheumatologist on south tce) he has Bechets patients and is familiar with the disease. I hope the team at the RAH are able to help you , good luck.

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