Very upset. Think its time to head to Liverpool,

Ive been with my current consultant for over 20 years went to see him today

and it became clear I need to find someone new. I've basically been without medication for year. And really struggling normally we get on really good but what I was telling him wasn't sinking in. I had utter hell getting my diagnosis As I developed Behcets at 12 years old

I'm living in Wales. but been attending hospitals in London. I just wonder please

If I wanted to have a chat with the people at the Liverpool centre how would I go about that?

Any help will be brilliant. I am scared at the thought of a new place but I cant go through what I did again today. Id rather just move on whilst I still have respect for everything that he's done previously

Many thanks

5 Replies

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  • Hi please try not to get too upset....it could bring on a flare as I'm sure you know. If you go to the top of this page and choose Behcets Society or home you will find links, addresses, telephone numbers etc for the society itself and the Centres of Excellence. There are also telephone helplines.

    Do let me know how you get on.

    Billi

  • thank you so much will do.

    I'm utterly stunned what unfolded I know we all get bad days. but it was so unexpected.

    you know that feeling when you lose faith completely in someone. I'm not a drama Queen but it really was like talking to a complete stranger.

    I'm going to look on the positive side and maybe take the hint after a year without any front line medication its time for a fresh pair of eyes etc and some new directions

  • Good. You are sounding more positive already. A lot of doctors dismiss Behcets out of hand and most of them don't necessarily know too much about the disease. Believe me when I say that the knowledge, research meds etc are improving, I know I've been suffering with BD for 32 years now and it was twelve years before I was taken seriously and had a great rheumatologist who finally got me on the right medications. Just hang in and try not to stress, rest when you need to. I find when I know I'm coming into a flare I often sleep 20 hours a day for a week or more but it does help with the flare. Not everybody can do this due to job, children etc. My first 20 years with BD I was bringing up three children on my own and working part time, when I look back I don't know how I managed but I guess we all turn into superhumans when it comes to our children.

    Anyway good luck

    Billi

  • You have my utmost sympathy.

    It is very hard to get good treatment in wales.

    Read the posts about food and reactions to foods.

    The hassle is that by keeping symptoms down by controlling foods..then the docs just don't believe that there is a problem.. so no help....but if there is no help anyway....

    Keep a food diary.

  • No advice as I haven't been to Liverpool, but just to say you're not on your own with this, and I am sure we all want to know how you get on.

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