Diagnosis Question

Our daughter was recently diagnosed with BD. She has been having a rough time, we are desperately trying to help her the best we can. She recently has had two spells where she has lost all use of her arms and legs, has shown slurred speech (and sometimes inability to speak), and what looks like seizure activity; however the doctors and the tests all show no conclusive evidence of stroke or seizure. Has anyone else seen this and if so what was the outcome? Anything you may have to help us get a glimmer of understanding would be greatly appreciated. Thank you!

7 Replies

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  • Behcets can affect the Brain (Neurological Behcets). However you will need to confirm if this is the cause of the symptoms/problems. Do you have an appointment at any of the Behcets Clinics? I would suggest you ask to see the neurologist consultant who will probably need to do an MRI scan of the brain to see if Behcets has been active in this area.

    Don't worry (easily said I know) quite a few drugs are available that can help treat the symptoms.

    I've had a few attacks over the past couple of years and on each occasion (fingers crossed) I've made a good recovery, although it can take a while. The tough thing is Behcets is a rare disease, activity in the brain is even more rare in Betchets patients

    Information/Guide

    behcets.org.uk/wp-content/u...

  • Hi, I'm so sorry your daughter is having such a terrible time. I've had similar symptoms as your daughter, though perhaps not as severe. Many Doctors appointments and MRI's later they have found lesions on my brain which fit with neuro Behçet's disease.

    I first suffered the neuro symptoms five years ago, they have eased however I am limited to how much I can do on a daily basis.

    My advice, if you haven't already, would be to take her to A&E next time she has severe symptoms. This should hopefully have her given prompt and thorough testing.

    Michelle

  • It could be a form of Hemiplegic Behcet's migraine

    My daughter had them and lost the use of her Right hand side - and was prone to "drops" - as soon as she was given Pizotifen it passed!

    Amanda

  • Hi, we've had a similar experience with our daughter. She describes her 'episodes' as an inability to process her words - she wants to say something and it just won't come out! One of her first symptoms of this horrible disease was the inability to read after being a complete bookworm. Our main concern is her short term memory loss, she went from being a straight A student to now needing a lot of extra support with reading and writing. We've recently had an mri scan which was inconclusive and consultants think it's a symptom of extreme fatigue. It's such a worry when there are no straight forward answers, i can completely understand how you feel as parents. Xxx

  • Thank you for that and I am so sorry to hear what your daughter is going through; reading is a joy for us as well, and to lose that would just be devastating.....

    Good luck and I hope the best for your daughter and you!

    Thank you again

  • Hi, I've experienced something similar although not at severe in the limbs. I was told several things by different doctors. One, I had 'hot spots' or areas of inflammation in the brain, and by a different doctor: that type of activity is related to one particular part of the brain. I would search out a very good neurologist. By the way, it passed.

    Cheers

    Lesley

  • Thank you for the response on this, we are trying very hard to do what we can for our daughter. It was nice to read that it passed, always nice to have some good news....

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