I have just returned from my doctors who said there is every possibility I have this Behcets. After trying to find out for 4 years what is wrong with me it will be a relief to know, even if I do have this horrible disorder. Another relief is reading through this forum and finding so many symptoms similar to mine...to know that there are other people out there who have these things is overwhelming...to know that I am not alone is the best news ever - not that I wish this on anyone of course, just that it has been so incredibly lonely and I have often wondered if I must be imagining all these things. Just wanted to share
Possible Behcets diagnosis: I have just returned... - Behçet's UK
Hi Julie and welcome. Yes it is a relief to find others and to get a diagnosis . I have suffered BD for 28 years and it took 12 years to get a kind of diagnosis. The main thing is I got to see the right doctors and get the right treatment . Behcets is not a nice thing to have but what is??? Best advice from me just keep living your life as much as possible, REST as and when you need to and question your doctors about treatments and meds. Life does go on and it is good at times.
Keep in touch with this site as we are all here to lend an ear through the good and bad times and we also enjoy some funny stories and laughs.
Hugs, Smiles and Laughter
Hi and welcome Juliet,
On one side it isn't great news being told you might have Behcets, but like you say on the other hand it is a huge relief to be given a label to what has been causing all the horrible symptoms you have been experiencing.
There is lots of information available on here through Behcets Syndrome Society and lots of members who belong to the forum are happy to share experiences and answer questions if they can.
If you are just feeling a bit down and want a good old moan, or something great has happened and you want to share it then this is the place to come.
Now you can continue and get on with life. Once you have the diagnosis so you will be starting treatment. time. I hope you are one of the lucky sufferers who are with a team who will be able to get you on the road to a more comfortable life quickly. You may find some of the drug treatments are not good for you but there is quite an arsenal of treatments available.
I know it is devastating to be told you have an incurable disease, but we all have learned to live with it, and survived! That old adage 'Keep calm and carry on', could not be more appropriate for us Bechets warriors. x
You have certainly come to the right place. This forum is filled with support and knowledge! I am just wondering who you are seeing for your diagnosis and if it is at one of the Centre's of Excellence? As Billi said earlier, it is so important to get the right diagnosis which will then move you on to the right treatment path.
Any questions about the Behcet's Society or the Centre's, feel free to message me.
All the best!
I saw a rheumatologist who gave me a bone scan and multiple blood tests but obviously nothing showed up at all. The symptoms then became horrifically worse so I saw my doctor and he suddenly yelled behcets...literally yelled it like he was playing bingo or something. I don't have all the symptoms of behcets but all the symptoms I have can be attributed to it. He said he is fairly sure that is what it is and will contact the rheumatologist again. Having read everything I just know this is what I have....it fits so perfectly. I am going to message you with a few questions about the centres.
Well, I'm a bit late to the party (again). I just want to say welcome, welcome, welcome. For a little while you will be able to think of nothing else but Blood Behcets but eventually you will remember who you were before being told you have an incurable illness. Don't allow yourself to become defined by your illness - you are still Juliet but you just happen to have a hook to hang your symptoms on!