neuro behcet's in Ireland

Hi, I have been suffering from bad headaches since christmas and have leisons on my brain but by neuro is not familiar with behcet's - i am the only patient he has with it! I dont feel he is taking this seriously enough and am very frustrated. i have been on sibilium, epilim, amnytriptline and asprin but I spent 4 days in hospital on iv steriods and was taken off the epilim and am now on naprosyn instead - along with the others, also on immuran. Since i came out of hospital 3 days ago i still have the headaches and my ulcers have flared up bigtime and i am exhausted when i contacted the doctor yesterday he told me to be patient i was having withdrawl to the steriods?? i feel i need a second opinion on how to manage the headaches but dont know of anyone in ireland. I would travel if i have to, i have heard of dr. kidd in london but dont know how to go about getting an appointment - do i need a referal and can i send on my scans etc and get help that way? I would really appreciate any help or info i can get!

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  • hi cailin im from ireland just read your post there sorry to hear your after having such a hard time.im kinda in the same position at the minute as you its very frustrating best wishes..

  • Hi john, I hope you get this message - i know it proberly sounds terrible but it is good to know i am not the only one in Ireland :) I am in galway and have just had 4 days iv sterriods for the headaches and as they didnt work i then got injections in my scalp - botex - could have been doing with it in other places instead lol where are you based? i would love to hear of how you are getting on my e-mail is kandccoyne@msn.com i will get an e-mail quicker than i would see a reply on this site. please contact me!

  • hi Cailin,

    do you live in the north or are you in the republic? I can tell you that Dr Kidd specialises in Behçet's headaches but there is also another Neuro specialist with Behçet's, His name is Dr Al-Araji he is based at ;

    North Staffordshire Royal Infirmary

    Princes Road

    STOKE-ON- TRENT

    ST4 7LN

    his secretary's e-mail should be;

    lisa.locklin@uhns.nhs.uk

    if Lisa is still his secretary; that is, at least it may be a starting pointfir you to makw contact, Dr Al-Araji is very thorough and in my opinion an excellent Behçet's consultant, I have had Neuro Behçet's for 28 years and have seen quite a few medical experts over those years/ I rate Dr Al-Araji as one of the best I have seen.

    I saw Dr Kidd a few times but managed to lose contact with his medical team, he was based at the Royal Free hospital London, but I could not say if he is still based there, so these details may no longer be of use?

    020 7794 0500 ext 38096 Dr Kidd Secretary

    d.kidd@medsch.ucl.ac.uk

    I hope this information is helpful for you, and I hope you can get the help you need and your Behçet's is more under your control, rather than you being under its control

    Kindest regards and best wishes,

    Paul

  • Hi i am in the south but would travel to anywhere, within reason - money is tight :( thanks for your help, feel free to e-mail me kandccoyne@msn.com

  • hi cailin i sent you an email just wondering did you recive it??

    regards john.

  • just got one e-mail and have replied - hope you got it!

  • hi everyone sorry to hear about your behcets its a horrid condition my husband has had it for 33 years.he is infact under dr kidd at the royle free so he is still there.he is a very caring man

  • Hi Cailin

    I live in Australia, however was diagnosed by Dr Fergal Moloney a dermatologist who I believe is now back in Dublin. He might have some answers for you

    Lesley

  • May I just point out that it is a good idea to send your personal contact details to each other via private message. Anyone can read this forum unless it has been set to be read by members of the group only.

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