Newly diagnosed!

Hi! I am 23 and have been diagnosed with Behçet's for maybe a year now. It took my doctors two very painful flair ups before they figured out what was wrong with me (being told I had herpes on various occasions even though the tests always came back negative). I recently just had another flair up and ended up in and out of emerg for three weeks.. while my specialists was in vacation the whole time (bad timing). I have come to realize not very many people in the medical field seems to know anything about this disease and nurses and residents usually have to google it when I tell them what I have.. So I've learned that I should really educate myself and figure out what to when im having a flair up incase no one else knows... Haha so I decided to join this forum to see what other people find effective with this disease!

6 Replies

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  • Hi Rhiannon,

    I went through something similar and for a few years really believed I had herpes although I never had a positive result. It can be so isolating when you can't find the help you need when you're unwell. I joined the site when I was first diagnosed and it's been a godsend especially when you can't work out why you are having certain symptoms. Glad you've found the group, it takes time to work out what caused flares ect but you will get there and you have us!! Lots of love and positive energy being sent your way.

    Best,

    Portia xx

  • Behcet's is a very difficult syndrome to diagnose as we all have ranging symptoms, and different things can trigger a flare. It could be stress, hormones, lack of sleep, something that you have eaten. I had my first symptoms when I was 14, I am now 55 and I must say I have more control now than ever before, it may be that with hormone changes things have settled down I just don't know. You must keep a diary of things that you eat and drink as you may see a pattern which could help. Certain foods can also cause IBS symptoms. Sleep is a must, if you feel tired then if possible sleep as fatigue is something most of us suffer from at some stage. One really important piece of advice is that you must listen to your body as it really does know best. If you get rashes or lumps take a picture then you can show your doctor as you may find that symptoms come and go and when you get to see your doctor they may have gone. Also listen to what people say and then make your mind up what is best for you. I take the natural way, organic food, toothpaste as it helps my ulcers considerably, homeopathy also for my ulcers Merc Sol 30c is brilliant, what may work for me might not for others, keep an open mind ask lots of questions and stick to your guns don't let anyone push you in a direction that you are not happy with. Sometimes life could be better but I have 4 lovely children a fab husband and a very positive outlook on life. I wish you all the best try and stay positive. Biddy xx

    PS I had so may herpes tests it was unreal and they all came back negative, ended up a bit of a joke at our doctors.

  • Hi I've suffered with Behcets for over 30 years and back then very little was known, it took 12 years to get a partial diagnosis ad another3/4 for a definitive. Much has improved at least here in the UK,thanks to the Behcets society who are responsible for this site, Centres of Excellence, fund raising etc. Also more health professionals are aware and treatments and meds have so improved.

    Do go to the home button above page or behcetssociety.co.uk and you will find a lot of information. There is currently no test or cure for this disease and we all have similar and different experiences with it. Also no one treatment works for us all and we all react differently to the many medications. I'm afraid it is still rather hit and miss for all of this. Yet we can still live fairly normal lives. I went on to have two more children and part time work. Stay strong and positive. Also start now,keeping a diary of how you feel each day and take photos of any ulcers,rashes etc. Take all this with you to every appointment and better still take somebody with you.

    Hope this helps

    Billi

  • hi (and welcome?) you are absolutely right. self education with regards to lab test values, symptoms and everything else you can find is important to differentiate between whether it is a bd flare or maybe your body being a normal human for once (unlikely but hey). joanne zeis has done a ton of research @jzeis and is very knowledgeable and write a book about the matter. i highly recommend the book. i personally think i have found a strong dietary and lifestyle link to controlling and maintaining flares if you want to click on my profile and see my responses to questions on this forum. other than that- google google google, rest, and stay well!

  • Hello darling.. I had a stroke in 2006 not been same since. Had one genitle ulcer 2 weeks ago now another one. Painful as you well let you swear. It hurts. Eyes hurt.and I'm now suffering bad arthritis in fingers elbows, never experienced this before.. anyways have a good day all...

  • Everything that 2106 has said in their reply is exactly what I have experienced. Sitting in the sexual health clinic was not one of my finest moments! Good job I have a sense of humour. I am on 150mg Azathioprine. It has stopped headaches - every month - and I feel like I am in remission from the disease at the moment. But the tiredness still lingers. The only way I can deal with it is to eat properly, and short steady walks. I have built my strength up since the beginning of last year when I was asleep for the first quarter. BUT, when I feel tired I sleep. It is just as hard on family as well. Hope thing improve, but remember you have children...you are bound to be tired! Take care x

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