Hi i am new to this and never realised that i can talk to all these lovely people out there and all share this awful disease. I am 39 and had behcets from around 9. Starting with lesions on my face mouthfuls of ulcers. I suffered with severe joint pain and was told they were growing pains.I got constant ulcers in the eyes and sore inflamed eyes and then at 12 i suffered badly with pains in my tummy swollen red lumps all over my legs coughing up blood and many other symptoms. I was hospitalised i had my appendix out but they said my appendix were ok when they did the op just the glands around were all swollen and full of Grit!!! I was tested for everything including crohns and all tests came back ok. Ulcers were found in the bowel but did not represent crohns ulcers. To cut a long story short i was told it was all in my head. How can a child make ulcers lesions high temps etc. To this day i still dont feel drs believe what i say i find it very hard. Anyway when i was 16 i transferred to the adult ward where one dr put all my symptoms together rather than treating each symptom and came up with behcets disease but i was not properly diagnosed until i was 23 in Leeds with Proff Chamberlain. I never spoke about ulcers in the vagina to anyone until i was 17 and i was in agony with them so told my mum. My dr was pleased as obviously they were trying to diagnose and this made it easier to say it was behcets. Steroids were used 60mgs and sometimes iv when i was really bad. When i was pregnant with my 1st baby in 1995 i was really poorly and hospitalised for the most part. Baby arrived and i picked up when he was 4 months i was found to be pregnant again (i was on the pill) I was not happy as i was scared i would flare. Lo and behold it started i was so ill and ended up on pethedine for pain. My erethema nodosum was rife ulcers everywhere. My dr at the time would just say ride the storm Mrs Millard ride the storm!! Somehow we rode the storm and my little baby girl arrived safe and healthy but had to be weaned off Pethedine which i felt so guilty for. Most the time i was on steroids which were upped and lowered. Then in 2004 i flared really badly ulcers were all over me from touch (pathergy) i was swollen all over my joints were seized migraine like nothing i had experienced before. I was put on thalidomide, then cyclosporin, azathioprine, methotrexate, which all never worked. After 18 months (the length of time it took to get funding and hospitalised the whole time) i was put on infliximab with methotrexate annd i can say i was like a new person it was fantastic. Sadly my husband decided he had had enough and left me. This worked for 3 years then i had a flare so they then upped my methotrexate and i took a really bad turn and went neutropenic my hair fell out and i was so ill and wheelchair bound and once again hospitalised and specialised nursed as my immune system was 0. After months of special care i was changed onto azathioprine and humira which again worked for me i met a new partner got engaged and went on to have 2 more babies As with all meds they seem to just stop working. My babies are 2 and 1 I am now on humira 40 weekly 90 mgs steroids daily and 20mg Leflunomide and still in a really bad way. I went to see a specialist in Manchester as i live in Cumbria and he said he has no funding to give what i need so i am about to be referred to the specialist centre in Liverpool to see Dr Moots on the hope of Campath or interferon. I just need this appointment now so i can be the best mummy i can be to my girls. They i my reason to get up every day but at the moment i cant even care for their basic needs. Luckily i have really good parents my mum is an angel and my partners mum is a god send to. But i want to be the Mummy doing the mummy things it breaks my heart to see them growing so fast without me. Its all the waiting for apointments that is wasted time this flare started when my last aby was 4 months and it took til last week to get seen it is just more added stress that is not needed. I came across this site by chance and have been so pleased to be put in touch with people like me. I have felt alone with this disease for so long as noone knows what this is like unless you have it. I do try to think there are people worse off than me but sometimes it gets tough.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.