Is there anyone here with Behcets from Australia? - Behçet's UK
Is there anyone here with Behcets from Australia?
Hi, this question was asked very recently - you may find this thread useful - behcetsuk.healthunlocked.co...
If you search for key words like Australia in the top right search box, you will find other threads with posts from people from Australia.
yep
Hi there! I am in Australia.
I'm in Oz too.
I should have worded that better - which part of Australia are you from?
Yes we live in Australia.
yes,another one in victoria.
oh wow,
i counted 8 and with me it makes 9
G'day to you all!
i live in Sydney
im turkish/australian
female
49 years young
Behcets Syndrome first visited me in 1996...
he came with a big bang, took my eye sight for about 2, 3 weeks
gave me migraines, ulcers, fatigue and conic joint pain, i was in Turkey on an extended holiday when the first blinding attack happened and luckly i was diagnosed and treated very quickly
and my eye sight was restored but Behcet insisted to live with me for about 4, 5 years...
When i returned to back home to sydney, i saw a specialist at RPA hospital, who maintained my meds. He had told me that i was one of 3 who had BS in australia, known to him.
round about the 5th year BS calmed down... i stopped the meds... actually i thought i was rid of it.
I thought that because of my lifestyle change, my persistants to uphold positive attitude and a whole lot of other life factors which i wont bore you with, i thought i had kicked BH out of my life for good. Although it would give me light vists now and then and i would welcome it, without giving it attention, it never seemed to stay long enough for me to get back on meds...
then for the past 15 years ive been pretty much on top of it all without visiting any DR for anything other than the occasional flu...
but beginning of this year my knees started swelling, my joints started hurting, migraines increased and fatigue increased... i started getting the ulcers and had a lot of bowel and digestion problems.... and mood swings, boy have i been on a roller coster with mood swings. never before have i been so sad.
i went to a local medical center GP, (having lost contact of all the previous Dr's and medical records) i explained my past history... but she didnt take me serious..
she said im probably under stress and sent me away with anti infamitory pain killers.... disappointed i vowed not to go back...
the pains and loss of joy for life increased... i went to another GP, told my story... he said 'are you suicidal? without even looking at me... i said if i was i would not be here!, vowing once more to never go back...
they say, never say never.... they are right, pains and sadness increased... so i went back to the same medical center but saw yet another different Gp, the first thing i said to him was ' i hope you hear me!' he turned around and listened, i told my story... he took some blood tests, and said it doest show signs of BS activity..... (though he wasnt even sure of what BS was and googled it in front of me nevertheless at least he listened to me.... he suggested that i see a specialist...
i agreed and got a referal.
I found this sight while trying to look up information and prepare myself to see the specialist, and have been reading the posts randomly... i can relate to so many who have written, in an odd way i even felt a little better that im not alone (not that i would wish this upon anyone) strange how 'feeling a sense of belonging and being understood' has in itself healing powers... anyway reading some of the posts i found the courage to make the appointment to see the specialist...
realising that most members were from england, i wanted to know how many are from Australia so that i could compare with what the Dr was going to tell me... well today was the day..
Today i went to see the rheumatologist. I wish i didnt go.
I came home in tears, totally disappointed once again....
though i dont know what i was expecting, i wasnt expecting to be told what i already knew
that 'BS is very rare.. that it originates from around turkey somewere and they dont know why etc etc etc... - hellooo uncle google told me all that already-
then he told me the blood tests didnt show any activity and that he wasnt convinced....
He said he wants me to have an MRI, ?
he said that maybe is should take some anti-depressant meds since im feeling so sad,
and maybe get some vitim B's etc....
i bit my lips so as not to cry but came out of his office totally recked...
i cryed most of the way home.
i dont know if i want to go back to that dr again...
so, thats me...
i dont want to make my life story all about BS ... (excuse the intended pun)
i am a strong believer and i believe that life is restorative, it is not vindictive
i believe that there is no coincidences and that everything speaks of and calls to greater truths... i know that Behcet syndrome spoke to me when it first came 1996, woke me up from deep headlessness, called me to look at myself, to give attention to priority and to heal the lack of sefl worth.... i believe that if its back its obviously got more to tell me... i know i need to be attentive...
i need to be realistic.. and proactive and learn to build a good network of both those who understand and those who are professionally equipped to guild me so that i can manage my condition without burdening anyone.... so that i can 'hear' what dear BS is telling me without being blurred and clouded from the suffering...
indeed suffering decreases when shared with compassionate ones, just as joy is increased when shared with loved ones
thankyou soooo very very much for giving attention and responding to my call..
thankyou for your compassionate sharings...
infinite love and gratitude
emine
Hi Emine
If you are living in Sydney I would suggest you get a referral to the Immunology Department of RPA. I was told that RPA has a special interest in Behcets Disease.
When I saw one of the immunologists there I told him I thought I was the only one and he quietly said no there are at least 4 or 5 being treated here at RPA. (Since then I have met up with Felicity).
I'm also going to a neurologist at Macquarie University Hospital Clinic.
Feel free to private message me.
Lesley
Thankyou Lesley
Yes i decided i will go to RPA hospital, The Dr i saw 15 years ago was based there and im sure if i go searching ill be able to find him.
I feel im just on the border, not well enough to not do anything but not sick enough for anyone to take real interest
im not sure if trying antidepressants is better than trying out the steroids?
if i should just hang and or get the MRI done?
i have a feeling my behcets effecting my neurological state
the confusion is sometimes worst than the body pain, but then again maybe the confusion is because of the pain???
I would love to meet you, when your up in Sydney, i think i read somewhere that you are from near Wollongong?
thankyou again..
love emine
hi emine
I have the same problem with my specialist that actually diagnosed me even tho my gp is from turkey and he has treated ppl ova there and knows the illness quite well my "specialist" always has me in tears so now I refuse to see him. Unfortunately my GP has left the practice to be a skin specialist now and I have no-one to help with my illness now, but I am going to ring the RPA as I can no longer live this way!
hope you feel better soon
kerry
I was born in Australia except raised in Northern Ireland which isn't what you were asking I know, but I was always curious on how the disease affects people in a warm climate and encase I ever return even for just visits as my father is still out in Sydney. Also the lovely artic climate we have here isn't too good for the disease but is a warm one any better?
I suffer from a lot of plueral effusions and pluersy here thanks to behcets and I just wondered if warmer shores would help that as well as the constant inflammed and painful joints.
Knowing our disease probably not but over here people would recommend hot climates to ease them problems for some reason. Its problary just because they are fed up with the constant rain.
Im from Sydney Australia and I was diagnosed 16 years ago and for the most part Ive been in re-mission but for the last 2 years or so my illness has been quite out of control. Im so glad I have found this site as it helps to be able to talk to ppl who know what you are going through and it was helpful to see the comment about RPA as I will now contact them.I was wondering if anyone has problems with swallowing? I have never had my problem properly diagnosed but I think I get ulcers in my oesophagus as I cant even swallow water without a lot of pain. Has anyone else had this problem?
Hope to hear from someone soon
Kerry
Hi Kerry (and others who've posted about their experiences), in answer to your question, yes I sometimes have problems with swallowing though not as severe as yours. I'm ok with water but anything hot can be problematic. As I understand it, you can (and probably do!) get ulcers and other lesions just about anywhere. I'm in Melbourne, and fortunately now in the care of an excellent rheumatologist who has kept the disease under control for the past five years. Alas, I've gone into decline recently and feel very sick at present (I have intestinal disease) so it was good to find this site. I was in WA when I became ill and it took nine years to obtain a diagnosis (eventually made by a brilliant doctor in the UK). The appalling ignorance about this disease, and the 'blame the patient' approach of doctors in WA has led me to a phobia about seeking help. Even now, I tend to go into hiding in the hope the flare will pass. It's good to find other sufferers in Australia for most people have never heard of Behcet's, and it can be pretty lonely! I have little inclination to tell people about the full range of symptoms (one doctor in WA concluded that there couldn't be anything much wrong with me because I had "an unexplained plethora of symptoms" and was "thin and anxious" - intestinal disease will do that to you!).
Hi Kerry, i live just outside of Geelong. 16 years ago i was diagnosed with Behcet's thanks to a Rheumatologist at the Royal Melbourne Hospital, but she has since retired. The Rheumatologist i have seen on occasions in Geelong doesn't really get Behcet's, plus has gone on maternity leave anyway. Can i ask who you see in Melbourne? It would be such a relief to find a doctor again that understood Behcet's. Cheers Brian (signing up on this site is really difficult, it wouldn't let me use my name or any part of it!)
Yes me from Tassie. Took decades to diagnose.
Hi, I live in Australia and born here. How can I help?
Yes I'm in Melbourne!
Yes I'm in Melbourne, diagnosed late last year. Born in Ireland.
any help for diet with behcets syndome ...
Recently diagnosed with Behcets - living in Ireland
Are there any doctors in Ireland who know about Behcets ??
Pregnacy with Behcets, been advised by CofE to get proper sunglasses for Behcets sufferers??
