Hi I was diagnosed with behcets disease last September after been admitted to hospital.

[Trisha916]

Ive been on different tablets since then and none of them seem to be giving me any relief. I have constant flares and fell exhausted most of the time, no one seems to no or understand what im going through and I feel very isolated. Would love to talk with someone else that has behcets

[cowpatty]

Hi there trisha i have B.D and it is horrible. I have tried many medications and i think that it is trial and error as to what suits you. As for you feeling exhausted a lot this is very common with B.D. Do not feel isolated as there are lots of us who have this illness. I was diagnosed with behcets 11 years ago but have been ill for a lot longer.

[behcetshurtsbeyondwords]

Dear Trisha,

I am very sorry to hear that you have been diagnosed with Behcet's-- it always hurts me inside when I hear of someone else being diagnosed because that means they are suffering much in the same ways as me. I would never, ever wish any of this on anyone else. Good thing you have decided to find a place to come to for support and comfort because I know what it feels like to be isolated and alone, and have no one around you understand exactly what you are going through. Others will always have their own ignorant comments and opinions because often we look healthy to them, they can't feel or see the sheer amount of exhaustion and pain we are burdened with, but here everyone you talk to is just like you many of us may have different symptoms and we all have our own unique experiences with this disease, but the one thing that remains the same and helps bind us all together, is the pain of Behcet's.

My name is Jenna and I'm 25. I was diagnosed two years ago, but am still in a similar situation as you are because every treatment that I've been put on hasn't helped at all-- some of them have actually worsened my health. It wasn't that long ago that I was suffering all by myself feeling so alone in life and feeling so many mixed emotions, including anger because I couldn't understand why I had to have Behcet's and nobody else around me has it-- I was told at the time of my diagnosis that I was the only known case of Behcet's in my entire province (I am from Canada) which just added to my isolation. As much as my mom and dad tried to understand, they just couldn't. So when I found this place, I was so grateful and relieved. It was amazing to be able to talk to someone else who also has Behcet's. I am sure you will feel the same way. I find that it really helps to know that others have experienced similar things that I've been through and it adds comfort in knowing that you're not just crazy or something. I was made to feel extremely weird and alone by my specialist because I also have another rare autoimmune disease, and he told me that its unheard of to have both rare conditions in the same person. But now I realize that many others out there also have other conditions along with their Behcet's.

Anyways, I hope that you can find some comfort and support here, and don't ever be afraid to ask any questions or post whatever you like-- the really nice thing about this place is that you can come here and let out all of your frustrations and negative emotions, and everyone will understand.

-Jenna

[Trisha916]

Thanks Joanne, im just finding it really hard now because I seem to be getting worse instead of better, I've been in bed now 3 days. I've to see a rheumatologist on Thursday and am attending a dermatologist once a month. Im from Dublin and there are not many cases here also.

[Trisha916]

Thanks cowpatty, I think I might have it years too, my doc kept tellin me I had a viral infection till I ended up in hospital

[billi]

Hi Trisha, I have suffered with BD for over 26 years now and it took 12 years to get a diagnosis, so things have improved quite a lot in terms of diagnosis and treatments and hopefully will keep improving. It is a disease of many symptoms and at times a flare can last a long time and then occasionally it just comes and goes at will. I have been lucky enough to have had 2 long remissions of 2 years and 6 years. I have also been able to work for several years and had 2 children. I am now retired and sadly having a rather harsh flare. I don't know how old you are but I can only advise you to be strong mentally, tell the doctors just how you are feeling, if you don't agree with what they say then tell them and ask for second opinions if necessary. Keep a diary to take with you, take photos of ulcers and lesions ( in case they are not there when you get your appointment) and finally take somebody with you for support.

This site is a blessing and you will find support and advice and friendship.

I wish you well and success with your appointments.

Hugs and Smiles

Billi

Ps I have sent you a private message

[Hidden]

Hi Trisha,

Welcome to the site. As you've found, this is a very knowledgeable and supportive group here. I'm sorry to hear you've been so unwell. Having Bechet's can make you feel very isolated, I'm sure. Especially since you've only been recently diagnosed you must be still finding your way around the disease. If you'd like to message me, I can send you the name of the Irish support group coordinator and also our telephone helpline. Both will offer you invaluable support. Hope to hear back from you soon.

Take care!

jean