New to site, how was everyone diagnosed?

[missjojo]

I have had lichen scelorsis for 20+ years and suffer with regular genital ulcers & mouth ulcers. When I was first diagnosed, bechets was suggested too but I had a long remission for about 7 years until I had my daughter 10 yrs ago and have had regular flare ups since then. I see a dermatologist every 6 months. Over the past 2 years my symptoms have got worse, skin rashes, light sensitivity, mouth ulcers, dry eyes, unbeliveable achy joints ( right down deep inside & crushing) ibs, frequent water infections, no body temperature control, psoriosis, dry skin, the list is endless. Some days I get up and feel so ill but no-one takes me seriously and ive been in trouble at work due to my sickness. My dermatologist is only interested in my LS & my local drs say nothing obscure is on my blood tests. 1 dr has said he thinks its BD and to keep a record of symptoms. Im going to start going to drs everytime I feel bad instead of just putting up with it. How did you guys get your diagnosus? Do you ever feel your just falling apart? How do you cope with work when you flare up? All advice gratefully recieved.

[klaris]

So sorry that you are suffering like this, and that you can't get anyone to look at your symptoms as a whole. Getting a diagnosis was such an important step for me, as I'm sure it was/is for everyone on this site - in my darkest, pre-diagnosis days I felt that if I could just give my symptoms a name then I could start dealing with things and move forward with my life.

My diagnosis eventually came (after many years) through a genital ulcer biopsy - which was horrible but at least led to a conclusive consultant diagnosis of Behcet's disease: however, I still had a real struggle after that because my GP just would not accept this and refused to say I had BD. I think he was doing it from the right reasons (in case it turned out to be something else) but it caused me a lot of suffering not to mention stressful arguments with him.

I would suggest that you keep a daily diary of ALL your symptoms, and take photos of anything that can be evidence (eg. skin problems, ulcers etc.) Do as much research as you can about BD or any other disease you think it could be; get the sympathetic dr on your side, see him every time you have a problem, show him your diary and your photos, tell him you NEED this to be diagnosed so you can start finding a way to get back on track with your health. See if you can find the name of a consultant locally who knows about BD, or perhaps be referred to one of the Centres of Excellence. Do not be fobbed off!

As for work, that must be so difficult. I had to give up a promising career in journalism and have struggled with working since then, though am now in the happy position of working part time from home which is wonderful. I hope you have a boss who is supportive

Really thinking of you, and good luck with everything.

Klaris x

[lyddy]

Hi,firstly sorry your having such a difficult time. I was recently diagnosed with BD, I was diagnosed by a rheumatologist, I have been ill for bout 12 years and was first diagnosed with ulcerative colitis an inflammatory bowel disease, I went on to have my colon/rectum removed, this should have then cured me but didn't I was suffering with daily mouth ulcers,extreme fatigue,arthritis,daily headaches and acne then recently after more bowel surgery my surgeon diagnosed Crohns disease, even though it explained alot of the symptoms it didn't make sense for all of them.

I was referred to a rheumatologist by this time I had multiple skin rashes,hypersensitivity,problems healing,bladder issues and had first genital ulcer, luckier he connected all these symptoms including the inflammatory bowel disease and said it had all been caused by bechets disease my blood results were clear but I had a positive pathergy test and I met the criteria for BD and my medical history backed it up and the rheumatologist had seen a lot ofcthe ulcers, rashes etc, saying this I no that Im lucky that I have a rheumatologist that deals with rare diseases and has a keen interest in BD, I really hope you find a d who will be able to diagnose it

[missjojo]

Thank you for all your kind words, your right a diagnosis is important to move forward. I will be keepingba journal & I do take pictures. It is just getting a dr to put it all together.

[goodlife]

I'm not diagnosed but I've been ill and at a recent rheumatologists visit Behcet was suggested.

So I asked my GP to refer me to the local centre of excellence and am awaiting to attend an appointment next month. There are 3 centres nationally.

I hope I havent got it but at least these people have an in depth knowledge of Behcet.

lyddy....interested to see that your bloods are clear....as are mine but I've had an awful time recently with joint pain and it mystifies me that I can have such a level of pain and show no inflammation....soo weird.

I hope that you have a GP who is supporting you. Jill

[missjojo]

Goodlife, I know about the pain with no inflamation! Sometimes I feel im going mad! I dont go to the dr as I just put up with it but im going to start now. Good luck with your appointment

[Steamboat]

I am sorry for so many of you that have so long being diagnosed?

I became unwell firstly with eye problems then developed ulcers,sore joints, positive pathergy tests. My blood tests have been abnormal right from the start.I was diagnosed from the beginning.

I became too unwell to be at home and had a lengthy hospital addmission where my case was presented at many clinical meetings so I guess if there had been any doubt it was quickly ruled out.

Good luck with your dr appointments

Felicity

[lyddy]

Jill

My bloods are always clear even with raging bowel inflammation the only thing that shows up on my bloods is a high rheumatoid factor, luckily my rheumatologist doesnt rely on blood results he goes on symptoms and by what he can see he said he has a few BD patients and it's quite normal to get clear blood results I feel lucky to have a Dr who thinks outside the box as until I had this Dr I couldn't get drs to listen

[goodlife]

Thanks Lyddy I missed your reply somehow.... I am sure that I will be a lot clearer when I've been to the centre of excellence. I feel reasonably positive that I am having small, positive successes, the colchicine has really helped and an increase of amitryptyline seems to be preventing the awful headaches...so progress.......though very slow jill x