does anyone else here have Neuro BD?

I am newly diagnosed and getting used to the immunosuppressants and steroids not to mention everything else that goes with it.

My story is similar to everyone else's, misdiagnosis after misdiagnosis. Hospitals, consultants just a nightmare.

I need someone to speak to with the same condition, to relate to and to compare notes with.

Where do I start?

10 Replies

  • Hi,

    I have neuro bechets. I was diagnosed about a year ago. Was treated at the time with immuno suppressants (mycophenolate), cyclophosphamide and heparin. Am now still on the immuno suppressants and warfarin. Hang in there. It's tough news to get and mainly because it's such a rare disease. I had good confidence in my medicial team which helps. I'm doing well at the moment which I hope is of some comfort to you. Happy to chat to you again. Good luck.

  • Hi there

    Thanks for your reply. It was tough news but not new as I was lucky to have private healthcare which kickstarted the diagnosis process for me early on and meant I was referred to the best Neurologist or at least a very well established one, experienced in behçets also on the advisory council for the

    Research board.

    That said it hasn't been clear cut and is very isolating.

    I am really pleased that you are in a good place at the minute, how have you found the journey so far drug wise work wise etc?

  • Hi,

    I agree it's very isolating. Some people I know, know people with bechets but not neuro bechets. Do you mind me asking how did your illness get diagnosed eventually? Mine came to a head when I suffered a venus sinus thrombosis (clot) in the brain. I'd had ulcers, skin rash for years before though. Agree re the private health care-I have health cover thankfully and would be lost without it. Re medications, I did suffer a set back about 7 months after my big flare up -due to the fact that they tried to take me off warfarin (standard after 6 months) and it didn't work. I'm now on lifelong warfarin. They also upped the dose of mycophenelate as well and I am very good now, no headaches/ulcers but I do get very tired. How are you feeling? Are you in pain? Re work, I took 5 months off completely and went back after that on a phased/part time basis for the following 4 months. I was lucky I had sick leave on full pay.back to work fulltime since June. I am in the office 3 days working remotely from home the other 2. Managing ok but it is tiring. Would prefer a 4 day week from energy point of view and I'm considering it. Can I ask what country you are in? I live in Ireland.

  • I am not too far away in the Midlands, U.K. The tipping point wasn't one thing in particular, the diagnosis has been there for s while now but it's been a series of symptoms. Episcleritis, impaired sensation left side and awful nerve pain that just isn't getting better and permanent damage becoming apparent.

    After mri's, ct scans, mrv's, nerve conduction tests and so on, my begged my neurologist to take action and here I am.

    I am lucky to still be able to work full time although that is pushing me to my limit, work are great but the occupational health team have no idea of what this is and how it effects me. With information so scarce I just don't know what the right thing to do is. We are discussing making adjustments (I desk based) but need something to benchmark against I guess.

    I have a fantastic wife and two beautiful girls who make life complete for me. A true blessing in their own right.

  • Hi Chris.

    Good to meet u as well -my name is Mary. It sounds like the disease has manifested itself differently in both of us so far. Do u mind me asking are u just on the immuno suppressants or did they treat u with any other drugs? I know, I completely understand the work situation is difficult. I was in A&E one night and the nurse on duty who had been working as a nurse for 17 years had never heard of it! I work for a large organisation and they had never heard of it either. Plus I don't look like there's anything wrong with me so think at times they're a bit baffled but they have been supportive. I'm not sure if you'd have the option to work from home at all but if u could, I would try to push for that. I'm not sure I could work fulltime if it wasn't for that. It's exhausting trying to commute etc. I'm so glad u have a good family. I have 2 great sisters and an amazing boyfriend which has made all the difference. Probably like yourself I've done a lot of reading on this disease-I'm not sure if I'd advise that as some statistics can be depressing and they may never apply to u or to me! Stress definitely does not suit me now. It completely tires me out. So this is also difficult to manage with a fulltime job where stress can be unavoidable.

  • I hope u can have a productive meeting with work to find a way forward with minimum stress to u. I'm also going to a counsellor every 2 weeks and I find that's really helpful also. As I say, family are great but they don't fully understand it either and it's hard on them sometimes also

  • My name's Chris by the way and it's a pleasure to meet you. 😃

  • Hi Papapickle,

    How did you finally get a diagnosis? I am suspecting this but not really getting the help I need.

    Did it take a crisis to finally get diagnosed?

    How are you tolerating the treatment? Does it help?

    I am just diagnosed with fibromyalgia, depression/dysthymia, widespread arthropathy, spondylosis, kyphosis, scoliosis, bursitis, enthesitis, patellofemoral OA, degenerative disc disease, bulging discs. Dry Eye. ?Psoriatic arthritis (no skin Psoriasis). Brother has Psoriasis.

    Asthma, eczema, atopy. Food intolerance. Chemical contact allergies, Pompholyx eczema, migraines. Mycoplasma infection. Mitochondrial disorder, fatty liver, progressive myopathy. Insulin & leptin resistance. Cognitive issues & poor concentration.

    History of severe skin problems. Folliculitis, boils, scalp infection with cellulitis & lymphadenitis. Thrombophlebitis foot after anaesthesia & sigmoidoscopy.

    Chronic nasal septal ulcers. Sporadic mouth ulcers (over a lifetime).

    History of stomach ulcer & atrophic gastritis. History of chronic sinusitis. Mild diverticular disease. Polyps. Fissures & PA abscess. ?Hydradenitis suppurativa ? Mixed Connective Tissue Disorder.

  • I have muscle weakness with some tender lipomas near some tendon insertions. One at elbow (just above) & one above knee inner thigh.

  • Hi there,

    It's great to hear from you.

    The things that you have described are awful and to be honest I cannot begin to imagine what you are going through.

    I guess the worst thing is that like many of us, you have so many things going on it must be tricky to pin down something that could cover it all.

    A lot of the things above that you mention are things I have had diagnosis for, for example the fibromyalgia but then there are so many pieces to this puzzle.

    Mess are working ok for me, but it's still early days and I am suffering but then I guess it will take some time to get things sorted.

    How are things for you?

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