Recently diagnosed...

[Aisling]

It has been a difficult few years and I am actually quite relieved to have the diagnosis... it only took me being hospitilised with oesophagus ulcers and ulcers in my left lung for them to finally say it is behcets after years of mouth and genital ulcers amonst other symptoms.

Unfortunately my eldest sister suffered with behcets but was never treated for it and died at the age of 35 from venal sinus thrombosis...which i am sure came as a result of not being treated properly.

Needless to say that is constantly on my mind.

I am not really finding it difficult to accept... but i still feel very stressed about having the syndrome. I am currently on steroids and having to go back for bloods and to see various different specialists as i am sure other sufferers of behcets are well aware of...

I havent really spoken to anybody about it either, which is why i decided to join this forum so i could interact with others who understand what I am going through.

[devonshiredumpling]

Hello Aisling and welcome. It's good to talk; when I found this forum it was like somebody had opened the floodgates and they couldn't shut me up! It feels so wonderful to know that the folk on here not only understand what you're going through but have the same experiences. The other thing I've noticed is whereas on other forums absences are noticed and commented on, on this forum everybody knows you'll disappear from time-to-time and there's no big deal. I love it

[lizzykarma]

welcome to the site. sounds like you know what your dealing with. im newly diagnsoed and struggling to accept it tbh, im in the denial stage, keep thinking its going to go away overnight- pretty much as quickly as this flare came.

However i have had a variety of symptoms and hospital stays over the years with no conclusive outcome/diagnosis since childhood, such as stomach and esophagus ulcerations, bowel ulcers, ibs symptoms, organs swelling with no reason why, at the moment my liver is playing up, was 246 on the last lot of bloods so having them redone on weds, hope its come down, taken milk thistle to try and assist, but im scared to do too much that will boost the wbc as that just encourages more to attack me lol.

Iv found massage really helps with my arthritis though.

Where about are you based.

I find the society and this forum really useful! sometimes its nice to just come on and have a rant isnt it.

There are also groups on facebook as well which are equally as helpful, such as the women with Behcets and the Uk Behcets group. Im thinking people have me down as a stalker on there- goes straight through to my mobile lol.

Im ont he steroids as well but hoping to start TNFs soon and beat this arthritis. Once thats done i can focus on the other symptoms but atm between the fatigue and arthritis i have moving around is a nightmare, working nr impossible, and walking something i tend to need a stick or wheelchair for. Iv been in this flare since June this year, so i can relate to your frustration, luckily the ulcers only last a couple of weeks each month, but the arthritis headaches and fatigue is there constantly.

wishing you all the best!

Try not to dwell on the experiences your sister had, stess does us Behcet-ers no good at all. I know i flare terribly if i get worked up over anything.

Sometimes it helps just to have a rant, i was sat here sobbing last night, logged on, typed away and felt so much better afterwards.

Defo join the society, there may be a support group local to u (casual meet ups), I know here in liverpool we have one and It will be my first time attending but im really looking forward to it. The society are really great information base for anyone with behcets. They have recently done a conference in peterbrough i found invaluable.

If anyone would like me to send over a copy of my illegible notes give me a quick email

xx

[SuenMike]

Hello Aisling,

I think the two previous posts have said all I would have said, already.

We are all in the same boat, and are therefore very much in tune with each other.

If you just want a rant, or to ask questions (not that we are medically qualified, some questions should only be answered by medics) this is the place to come. It is often just comforting to know that there are people out there going through the same problems.

Mike and I went to the recent AGM at Peterborough. One of the nicest things about that day was that we were able to talk to many people with the disease. It was also quite galling to find out that only about 1000 people have BD in the UK! You see, we are all quite rare!!!

All the best x