i need some advice on my recent attack of neurobehcet's condtion?

i recently suffered a neurobehcet's attack in January after previously suffering only with ulcers, i am now having cyclophosphate (chemo) and steroids as i suffered symptoms of stroke on my right side, i have now got all movement back although it is still weaker and i get very tired and emotional i understand is this normal and will it get better i am not yet back at work as the treatment i am on knocks me for six and i am unable to work i have lowered the steroids from 60g to now 10g per day which has made me feel very bloated just wondered if anyone has suffered the same and is there any light at the end of the tunnel because i am trying to be positive.

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  • Hello

    I have been diagnosed with Behcets for over 13 years and have now progressed systemic and multi organ including my brain causing neurological problems and cranial brain liesions. I have not suffered a stroke but am aware of the difficulties Behcets causes once it effects the brain. I think the extreme tiredness is part of having a progressive type of Bechets and it takes time for the body to deal with the type of flareup and difficulties you have suffered from Behcets. I have been taking steriods for about 11 years now and understand your frustration with the side effects. I have found that as I reduce the steriod strength my weight/bloatedness from the steriods reduces also, but have found taking steroids has probably saved my life at times.

    Maybe you will able to return to work as time goes on but it is important you let your body heal as much as it can. From your message it appears you are under the care of a neurologist who has knowledge in Behcets? I managed to work for several years once my Behcet's progressed neuroglogicaly but personally struggled everyday, I was adviced to go from full time to part time hours and eventually adviced by my health care givers to stop work as the stresses and strains of work were slowing down the remission process after each flareup.

    I have found there is light at the end of the tunnel, but it took my health professional caregivers several years to make me see sense and realise i needed to take really good care of myself . I have now learned to take every day as it comes and go with the peeks and ebbs of having Behcets.

    i really hope you recover fully well and your energy levels return to their maximum soon. Take care.

  • Contact the Behcets Society on info@behcetsdisease.org.uk for details of specialists in UK who might be able to help

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