I have been really ill (you know how it is) over the past few days. I was diagnosed in April and have gotten no follow-up appointment, no explanation of the disease, no support from doctors...I basically got my results back and was told I had Behcets disease. I have heard nothing since. My only information about the disease is through the behcets society website (UK).
I am looking for a doctor in Ireland (republic) who knows about this disease. I feel like I was told what I had and pushed out of the hospital (and sent out a hefty bill in the post!)
Should I be looking for an Immunologist? I am getting worried as my eyesight is terrible and getting worse (floaters in eyes/blurring etc) and I cannot stop twitching. Apart from the eyesight and twitching I have severe migraines, stiff neck, sore joints etc etc...I'm a mess!
It's hard to know who to look for (especially in Ireland) as the symptoms are so different and require different specialists, I'm going around in circles asking for help from doctors who appear to be on holiday every second week! :/
Does anyone know of any good docs in the republic of Ireland ?
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Denise--
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I live in Ireland also and was diagnosed about 2 month ago with Behcets. So far I have found no specialists in Ireland only Rhuematologists with an interest in the condition or a knowledge to give diagnosis. I am from the west and have received excellent care, I seem to have opthamologist appointments every 2 weeks and attend a connective tissue clinic every month. I think it is important in the early stages to get the treatment right, your diet right, exercise right and learn to rest and relax to try and control the "flare ups". Maybe you need to find a new doctor or be asking more form the Dr. I think I was lucky that when I was in hospital I had a good rhuematologist who joined the dots when i had mouth ulcers and reactive arthritis in my knees and acted on side of caution, however I did keep attending clinics and telling them that i felt exhausted and not right. I am still researching all this myself so will pass on any information about doctors if i find it but will probably end going to the uk to one of the specialist centres in Birmingham.
Good luck and keep the chin up, there is a lot of ignorance out there due the rareity of the disease.
I was referred to dermatology but the docs secretary said that he refused to take me on, all doctors are on holiday and all I am getting through to are secretaries on cover. Nightmare.
Darren, I'm in the west of Ireland too. I was diagnosed in April after being in hospital for a week and have received no follow up or treatment-even after chasing them for months. If you find a good doctor let me know. I'm beginning to loose it, my GP is a total waste of time. Thanks for the replies, I have gotten nowhere in the past few days so I an changing GP and going to bed for the day!!
I am based in Galway and after I was in hospital I have had follow up appointments back at the hospital with the rhuematology dept-then I got moved to a connective tissue rotation at the hospital. I was attending theses appointments on a monthly basis or I could call them to make an earlier appointment if i felt unwell.
Its easy to get frustartaed with GP's, I didnt find my own gp very knowledgeable-but then I didn't expect him to be, but to be fair to him, he always has advised me where to go and refferred me to the right people. Maybe ask your gp to refer you to so you can get you on a rotation at your regioanl hospital- mine is Merlin Park. The two consultants that seem to have a bit of knowledge on behcets are Dr John Carey and Dr Robert Coughlan. They told me that there are about 30 behcets patienst in the west of ireland, which is reassuring as it means im not alone and they have experiecne of managing the symtomsof behcets. I have met with John Carey a few timesand he is quite compassionate and came across behcets when he worked in America. He put me on a course of methatrexate early and also when things took an turn for the worse last month with the uveitis in the eye he got me in immediately for high dose steroids via IV to try and control things. He seems to be looking to treat symptoms aggressive to control the symtoms and manage them.
I was surprised that I received no follow up because I was admitted into hospital for a week and the first doctor put me on the wrong medication which made me worse. I even had a biopsy done to diagnose behcets. I might check out your hospital, I don't think mine has experience of Behcets.
My doctor sent me straight to the hospital when I was ill and then went on holiday for 2 weeks so he did not see me when I was really bad. (Although every time he sees me he tells me how ill I look-cheers doc! ) He has referred me but to no avail; I feel like I ring the hospital daily with no progress.
I think I'll just go to an ophthalmologist myself and get some painkillers. The tiredness is killing me though and I haven't worked in a while (so I'm broke) but starting a full time job again sounds impossible. I'm fed up and frustrated to be honest and venting...a lot
I'm in Sligo myself so I would not mind travelling to see a good doctor.
I would love just one day where I do not feel unbelievably ill and can work again. Talk about depressing haha
Sorry for the delay in replying to your question, but have only just signed up!
I was diagnosed in Britain in 1973, where I was treated in a similar fashion to you. I moved to Tipperary in 2001 and after a few doctors have found a really good one in Cahir who has managed to really help (hurrah!). Furthermore his wife is a Consulatnt Opthalmist.
Hopefully you can get my details from the membership list and will happily pass on his address.
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