am being seen at maidstone hospital every six months (when the app not cancelled) and they say as i cant take colchicine they wont give me anything else as i am not ill enough
despite severe tiredness .genital ulcers and joint pain ! apparently its my age ime 52 not 72 ........ so its probably me being menopausal .. grrrr
Hello chocalatedog;
Mouth sores and ulcers in the genital region. Colchicum are Dispert and cortisone therapy. Careful issue of Nutrition. Menopause not create the floor of the mouth and genital findings. Whether a specific treatment of the disease is expressed by the physicians. But tight connector's life. We shall see good days
To discuss;
I also got fed up that the local hospital were hopeless. Then I was told by a gp friend of mine that everybody is intitled to be able to choose which hospital and consultant you see.
I looked up on the behcets website re who were the recommended consultants.
It took a while but I now see a top behcets consultant at st Thomas hospital.
I hope this helps.
Anna
Whilst my comment won't immediately make you feel any better I hope you will take comfort from what I say and that you also find help. I'm 50 and have been suffering with Behcet's for about 25 years; it started suddenly after an illness and has been with me ever since. My doctor was like an ashtray on a motorbike and kept telling me I was depressed!! I just suffered non-stop and had no help. At one point I was in so much pain I called the doctor for help and he refused to see me immediately. He said I had always had the issue so I could wait a week for a standard appointment. I fired his useless a**e and moved surgeries. (I hope that isn't too abusive for this site?) I changed about 3 years ago and then I went to my hospital and happened to have a mouthful of ulcers. The consultant also noticed them and because it was erythema nodosum on my legs he asked if I had heard of BD? It took until 4 months ago for them to diagnose BD but that consultant was so helpful and treated me as best he could. I was lucky I know and now I have two specialists in my area (South West) that are helping me.
I hope you take heart from my story and also take Frisky's advice and seek out REAL help. Do not let them fob you off and don't allow their ineptness grind you down. You deserve help so keep fighting and you will get it.
Take care
DD
I feel for you chocalatedog and agree with frisky.
After being diagnosed with Bechets I eventualy got to be seen at the bechets clinic at St. Thomas Hospital. I was under proff Fortune and proff Stansted. In the meantime I found out that there was a centre of excellence where you are seen by the above proffessors and also a rhumatologist proffessor too. So my GP asked for me to be transfered to The London Hosp. in Whitechaple. I have my first visit there last week and it was brilliant saw them all in the one place. You are entitled to choose where you can be treated.
Hope you get it sorted !
Oh, chocolatedog, you must be feeling quite desperate 
As the others have said - there are medics who understand our problem but, sadly, not many of them. You have every right to see who you want to see. I found my initial consultant via the behcet's website and he was excellent. However, some recent stays in the local hospital have made me realise that seeing somebody from another health trust (Bristol) meant that my local hospital didn't have all the information needed to deal with crises in my health. So, I've transferred to the rheumatology department back here (Devon).
It seems to me that everything to do with getting the right care is a matter of compromise and that is entirely unsatisfactory!
However, no doctor worth his salt would tell you that you're not ill enough! I suggest you find yourself a new one asap - contact the behcets society, they're really helpful and very very nice.
Warm hugs
love
Di
Hi Chocolate dog, I took matters into my own hands and made an appointment for the immunology department of a large teaching hospital (and then asked my GP for the referral - which surprisingly they quite willingly gave me.
I explained to the immunologist that amongst other things I had a brother with sarcoidosis being treated with Infliximab and prednisone. His response was that he couldn't justify putting me on that treatment because of the risks and that he couldn't pinpoint what was wrong with me. On the other hand he said that 'alarm bells were ringing' because of my symptoms and strong family history of autoimmune diseases and referred me to a friend of his in the dermatology department.
Within weeks I was on Infliximab and prednisone. Actually I am very grateful that he was humble enough to send me on to someone else (and also not belittle me as others had done).
Just a little sad/funny side-point to the story. My dad once said to me that he would give his right leg to know what was wrong with me and to get treatment. He was actually in hospital having his left leg amputated (3 years ago and still going strong) when the light bulb went on about seeing someone in that hospital.
What I am trying to say is because this is such a strange illness you have to take a bit of initiative (along with trying not to insult anyone) and find some doctors who will help. Like Dan I have also changed GPs which makes a difference. Actually what I did with the GP was make an appointment with another one and explained the situation to see if he wanted to take me on (without first burning my bridges) - then I sent a thankyou card to the other GP explaining because of my deteriorating health I found it too hard to travel to the surgery (which is in the next town). The receptionist at the new clinic said I was the first person to have done that, but you never know if I have to see my old GP sometime and it is better to be pleasant about things.
Lesley
Hi chocolatedog; Behcet's Syndrome do not have a long way between the health, your friends make some positive, health and happiness to us use that power in us a secret. In spite of everything beautiful life
Heart full of happiness
Sleep walking during flare ups
Strange Bruises During Flare Up
How often can flare ups occur?
Does anyone have these same symptoms? Has anyone's condition cleared up? If so what did they do?
