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...

7 Replies

  • Hi,

    I won’t attempt to answer all your questions, but regarding your chest problems, this factsheet about some effects of Behcet’s disease may be of interest.

    I quote: “Chest: wheezing, breathlessness, haemorrhages, haemoptysis, pleurisy, pain”

    You can read the full document here:

    I'm not a medic, but regarding your Neuro question, patients may have the same or similar neuro symptoms without having the same cause. Opinions differ and some don’t believe/understand that there is a difference regarding Neuro BD and BD with Neuro symptoms.That has been discussed here many times. Personally I believe a patient should seek the opinion of a BD Neuro Specialist and be absolutely clear about the cause of their neuro symptoms so they can receive appropriate treatment.

    It's great that your Rheumy is a lovely person and it sounds as if your GP is on the ball too - it sounds as if they are open minded and showing them some of the factsheets may help.

    You may find this useful:

  • Thankyou Tigerfeet, I am so grateful of your reply. I have downloaded the factsheets, very interinteresting. I have A LOT of these symptoms and it all started with my brainstem, which again is mentioned in the factsheet. The day I collapsed, is the day everything went hay wire and nothing has been the same since. I was told I had a brain tumour to begin with and again the fact sheet mentions this as quite common when there is brain stem involvement. Thank you again, really appreciate the info. I will also research some more.

  • Hi there,

    When you see different specialists who specialise in different parts of the body, they often do not understand other parts. Behcet's can indeed affect lungs. You sound like you have neuro-BD symptoms, like I have - headaches, slurred speech, awful short term memory. Keep working hard on getting the right medication - it can be a slow process - but worth it in the end.


  • Thanks Guevara, I think your spot on with different specialists. My consultant is lovely, but unless you have A tonne of ulcers nothing else really interests her. So my tonne of neuro symptoms just doesn't seem to be in her interest. She doesnt deny they ate not real but we hit a dead stop wen it came to treatment. My gp seems a lot more clued up over this. He is convinced my chest problems are absolutely linked. Trying explain to my consultant what a brain fog is was like talking to a brick wall. Thanks again for your input. I'm pleased I'm not alone with these very real symptoms..

  • I find this thread really interesting. I have Hughes Syndrome which is Antiphospholipid Syndrome (APS) and was diagnosed after a Stroke. I read that the stats were something like 48% of Behcets patients have positive antiphospholipid antibodies. The symptoms that are described above for neuro BD are also some of those of APS. We are treated with Aspirin to anti-coagulate the blood if no clots have taken place but if symptoms are really bad then it can be stepped up to warfarin which has a remarkable reaction when thinning the blood properly to get rid of all the headaches, cognitive, balance and general fogginess as it is the sludgy blood that the brain does not cope with very well.

    I suppose my question is, do any of you get tested for APS when you have "neuro BD"? Its just that neurologists have a very bad track record with APS and therefore it worries me that perhaps there are people that are not being fully accessed and treated.

    I also worry because I have now been referred to the London centre to see if I actually have BD. There are so many cross over symptoms which its difficult to know if its down to one thing or another.

    As has been mentioned above I dont have lots of ulcers but other symptoms seem to fit. Im also not eager to have yet another label and worry that it will just muddy the water. Its good that the London centre has all the specialist under one roof and hopefully will communicate with each other which will make a pleasant change!! :-)

  • Hi there,

    Welcome to the site! I wonder have you thought about getting a referral to one of our Centres of Excellence? We have a Neuro Behcet's Clinic in London on the last Wednesday of every month. you would need to see your GP or Rhem. for the referral and if you'd like to message me, I can send you details. As I see above, the centres have Behcet's Specialists all under one room, and yes they do communicate with one another, hopefully making it quicker and easier on the patients. :)

    Best wishes!


  • I also am less troubled with ulcers and have issues with choking, speaking and recently I notice that my breathing is affected particularly during sleep.These symptoms flare depending on the illness, then gently recede away again. I only have a probable diagnosis due the lack of ulceration, I suffer inflammation of many of my soft tissue like gums but colchicine does help me with that immensely.

    However there is another lady called Andrea who can give you better advice, I will drop her a line and I am sure she will pop on as soon as she can.

    It seems to me that Behcet goes in strains and this one you talk about is like mine and is more neurological in symptoms,though awful joint pain.

    However, please let me try and reassure you that although I agree with you that breathing can be affected, I have an excellent Rheumatologist specialising in Behcet who is confident that I do not have Neuro-Behcet and MRI's etc. Jillx

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