Hi everyone, I would really appreciate hearing from anyone on here who has neuro bechet's. I went to see my rheumy today, who specialises in bechet's. She is a lovely person but because I don't really get many ulcers if any she wasn't very concerned. I saw a neurologist last year, he said my symptoms were consistent with bechets. He got together with my rheumy and agreed this together. I have never suffered a lot with ulcers, I get a lot of swelling and joint pain, nerve pain aswel. I have erythema nodosum on my legs at the moment. Since march I have not been good, I have had awful problems with my chest, and difficulty breathing. I have been on steroids for 3 months, only this time the steroids haven't had the impact they have had previously. I was put on Colchicine and havent noticed any difference yet. I told my rheumy today about my chest problems etc and she said its not linked with bechets. She said people don't get problems breathing with bechets. My gp however said he thinks it has everything to do with it. He said my lungs were inflammed. My hands have been swelling up, my knees, and my eyes. I get a lot of neurological symptoms and they are extremely debilitating. My short term memory is effected, headaches, balance, light sensitivity. My speech can be effected,and on and on, i have listed it all before. I am really iinterested to hear of anyone else here who has neuro bechets. I would like to know what your symptoms are and how it effects you on a day to day basis. Also how you were diagnosed with it, what symptoms led them to tell you it was neuro bechets. What medication you are on to help and is there anyone here with bechets who doesn't or rarely get ulcers...thanks for reading...
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