memory loss or lack of concentration?

[mybehcetsxx]

hi everyone i know this has already been discussed but up untill i joined this site i never knew that my memory loss, or lack of concentration was down to BD. i feel a little relieved now i know im not going mad but my memory is pathetic!! i keep making plans and as soon as i done it ive forgot and making other plans, literally within 2 minutes of each other, (checked on my phone) to be honest its caused a lot of trouble and im a little concerned as i have 2 young children one of who is a diabetic. im carrying a diary now to try an help but does anyone have any suggestions??

[infliximab74]

Hi

I never new it was part of the behcets either. I get so confused and like you it has caused some arguments. When you start talking to people with behcets lots of things come to light.

[mybehcetsxx]

so i have noticed ive been diagnosed for 13 years but never accepted it until now, ive not even mentioned it to the hospital but i will when i go in 2 weeks. it is so frustrating and i think the more i try to remember a task i need to do or plans ive made the more i forget.. !

[Hidden]

Hi,

I thought I was going mad too.... Finding this site has helped me understand a lot more about BD.

I have to put reminders in my phone the minute I plan to do anything. C xx

[mybehcetsxx in reply to Hidden]

thanks thats excatly what ive started to do now. hopefully that should help xx

[devonshiredumpling]

There are quite a few of us in this situation and it can be very scary indeed. I posted something a couple of months ago and there were lots of suggestions - maybe if you look up my posts by finding me in the directory and then clicking to see my posts it will help you to find the thread.

As far as telling the medics are concerned - they've never seem very interested in my memory issues. Before I realised it was part of the BD I really thought I was getting Alzheimer's, which illustrates just how worry-relieving this site can be.

Di

[devonshiredumpling]

Found the thread for you:

behcetsuk.healthunlocked.co...

[mybehcetsxx in reply to devonshiredumpling]

thank you devonshiredumpling i will defo look it up. and i too thought i was going mad i never told anyone untill this week thank you for your support and advise xx

[Shalom-yall]

I have been telling my doctors (7 specialists) that I am so very confused and disoriented, hoping that one of them might be able to suggest some kind of treatment or med. But they don't seem too interested or concerned. However, I don't think most of my doctors know a lot about Behcet's. I'm wondering if I should give them some material to read on the connection between confusion and Behcet's?? Luckily, my neurologist has finally scheduled me for an MRI and other tests. Finally! But he seems to have little knowledge of Behcet's and the confusion thing. This is so frustrating.

[mybehcetsxx]

i will mention it to the hospital for the first time next week , but by the sounds of it they too most likely wont be very interested. luckily though the doctors i see in birmingham are educated on behcets so should get somewhere. xx

[billi]

Hi all

I too have been suffering all mentioned and more recently dizzy spells, off balance sleeping almost standing up. I have just had an MRI/MRV brain scan which only took me 5 years to persuade the docs that something was wrong. Before anyone starts panicking, I have had BD for 26 plus years and am in my early 60's so I was truly worried about dementia. Anyway I will let you all know when I get the results....maybe they will come up with something!!!

Hugs and Smiles

Billi

[klaris]

Sarah-lou you have summed it up perfectly x

[mybehcetsxx]

klaris i agree sarah-lou has summed it i was doin the access to HE in social science and had to leave it because i wasnt managing full time education and parenting. hopefully i will attempt it again in September. xx and life stresses defo make things worse. x

Goodluck with your scan Billi xx

[scruffy1]

hi all I have just had all the tests mri ct lumbar puncture and a whole lot of other weird and not so wonderful tests after being admitted to hospital after a big flare and as you have all said the symptoms headaches confusion the dizzys memory loss the whole gambit I was diagnosed with neuro behcets but I have been complaining about that for a few years and I got the look from the docs you guys know the one the one that says hypochondriac or lunatic or both but at least I found the cause of my problem.dont panic the tests could just have easily been clear and as we in this community know BD is a hard disease to nail down so keep a diary and put the reminders in your phones and keep fighting and never give up on the plus side if there is one I started on infliximab and its working well feel a lot better and deffo helping the neuro symptoms!!

kindest regards chris