Hi everyone, I just wanted to say it's been a long journey to finnaly get diagnosed, as I'm sure many of you guys have too. Just wanted to share my story as it might help some of you guys with your struggle.
I would definitely say I have always felt that my body was working against me from a very young age, I'm now 35 years. I use to get ulcers in my mouth since I can remember. I was always so tierd all the time. And after doing P:E and swimming my body use to hurt like crazy. But being young and trying to get anyone to belive the pain I would be in, was almost in possible. This included my own mother. I was always told stop being so lazy or stop being such a hypochondriac. (my favourite ) once I was older and was able to take my health under my control. I would go see the doctors to explain the pain, ulcers and just how I felt, they all told me your too young to be sick. It's a viral infection. Went to the dentist about my ulcers. And they were you need to go see your doctor. I went backwards and forwards for years. Eventually the doctors dI'd bloods test. They came back normal. I lost hope in the system and learnt to just shut up and put up with it. As the time went by my symptoms would get worst. Now I had new ones migrans, the worst headache I had ever felt. I literally fainted several times at work. Back to the Gp I went. They gave me some pills that did not work. Was told again I was to young to be sick. So back to my normal life I went. Suddenly my knees will swell up all the time and the pain was unbelievable. They took an xray and bloods and although my cpr showed at 24 they said I must be putting to much pressure on my leg and it will go away. They precribe ibuprofen. Wich I ended up taking for several years. Yet again I went to suffering in silence as I could not get anyone to actually belive that there was something wrong with me.
Back in 2010 I gave birth to my beautiful daughter. She was healthy until she turn 3 years old. She became so I'll over night. Ulcers that was the size of a 10p coin, throwing up, diahorea and pain that she will scream out loud all day and night. Everytime I took her to A&E or the GP I was told it was a viral infection. I felt like I was in a never ending dimension and yet again I could not get anyone to belive that I thought there was something wrong. Then her Gp took one look at her one day and said oh my she's been sick for a long time let's do some bloods. I'm not sure what she saw but she was doing bloods every single week. She referred her to the gastro specialist. Whilst waiting for this appointment she ask me to do a diet change and see if it would help. So we did. No dairy no weat. Nothing help. She keeps a close eye on her bloods and stool sample regularly. Her cal proctectin was over 400 a normal child is less than 40. The was inflammation was through the roof. She sat me down one day whilst we waited for an appointment from the gastro specialist to come through. And she said I don't want to worry you, but I think it's crohns disease. My heart sank. The day came to see the gastro specialist and what a waste of my time. He took a look at her and said theirnothing wrong with her. He had all the evidence from her gp but he refusedto acknowledge that there was a problem. He said let do no dairy and no wheat for 6 months and come back and see me. I was so angry. I decided to take my daughter home and look after her myself. And I did that for a while. Then she would have these terrible flare up and I could not bare to see her in so much pain. Plus it got so bad. That we thought we were going to lose her at one point. So I went back to her GP. Only to find out she had now migrated back to Australia. Then trying to actually find another doctor to belive she was sick was almost impossible. They all kept saying it's a viral infection she will get over it. Eventually I was refered back to the gastro specialist again. We saw a different specialist. Wich ended up to be worst the the first one. I told him that hr GP thought it might be crohns disease, he said no, as she did not follow the pattern of crohns disease. We argued as I ask him to look into maybe something else. He kept saying it was normal for the ulcers and blood in her stool. And that she may have IBD. And that he was going to dismissed her from his care. He even wrote a letter back to the GP explaing I was a hypochondriac and over reacting mother. The stress this man cause me was unbelievable. So bad that my behçet's disease came with invention. I became so sick, but had no time for me to be sick as my daughter was really sick. I suffered for years in silence, didn't even tell my husband. I had to make an actual complaint about this gastro specialist so that he wouldn't discharge my daughter and get him to do a endoscopy and colonoscopy and a biopsy. He was so furious I had made an official complaint. He called me and my husband 5 days before Christmas and he shouted at us. And said all I want is for a doctor to open my daughter up and remove organs. Yet again I tried to explain that was not the case. I just wanted further test to be done to exclude other illness. He eventually did the colonoscopy and endoscopy wich showed a heath bowel. He did say I told you so. At that time he released her from his care. So I asked her GP I wanted a second opinion, which she agreed with. She is now at the evelina hospital. Back to my health. As I suffered so much stress. I couldn't take no more. I now have had ulcers in my mouth everyday for over 2 years. I went to see a GP she sent me to the rheumatologist they started checking me for lupus. And although my cpr was over 20 he could not diagnosed me with it as he did not belive it was lupus. Back to the GP I went. They didn't know what to do with me either. And in that year I had caught 9 lung infection. I went home put all my symptoms into googles and behçet's disease came up. I was like OMG that's what I have. I went back to the GP asked them to referred me to the royal london hospital bachets centre. She had never heard of it. She did a quick look on googles and said no. She didn't want to referred me there as she had never heard of behçet's disease. I left and made and appointment with my daughter GP and she did the referral she told me to take picture of everything all my symptoms. Keep a diary she told me. So I did. The first time I went to the behçet's center I was told it wasn't that. They gave me a mouth wash and made another appointment for after 6 month. In that 6 months period I strarted to get pain in my uturis so I went to see a gynecology only to tell me that I have ulcers in my uturis and it's also abnormal. I just recently went back for the 6 month check up. Not only do I have the gene but my behçet's is really sever. They have also ask me to get my daughter GP to referred her thete also she belive my daughter is suffering from behçet's. And that's where I am today. So for all you suffering out there who have not yet been diagnosed, don't give up, stay strong as you will have to fight. Keep a diary and lots of pictures as this will help. Now my treatment can finnaly start. And in the near future my daughter will also have an appointment at the behçet's center too. Till then we have to stay strong.
Recently diagnosed with Behcets - living in Ireland
Is rapid bruising a Behçet's thing? 
Newly diagnosed and very confused 
Diagnosed last month
