Recent rhuemy appointment dont want to label me with Behcets

L1985

Hi everyone

at my last rhuemy appointment I was told I had Behcets and was then referred to a behcets specialist who I saw yesterday.

At the appointment I was told that they didnt want to label me with behcets incase it turns out to be another arthritis and doctor stop looking at new symptoms and just blame them on behcets. I understand where the doctor is coming from but I was really hoping for a name to whats wrong.

The doctor said it is pointing in the direction of behcets and is writing me a letter to take to a&e if I ever suffer with a blood clot or trouble with my vision so they know i have possible behcets but with me having no eye involvement he is not confident to say its behcets. With them doing that it makes me think they must think it is behcets as why the letter? i feel really confused about it all. TO make is more confusing he said not all patients get the eye problems so what are they waiting to happen to confirm it?

Also they started me on some treatment but its totally different to what was discussed at the previous appointment. I have been given Colchicine to start which I understand is a 'safer' drug to be on.

Just really worried incase im not on the right treatment and what they are waiting to happen. I was asked if I have had a stroke as apparently alot of young people have the stroke before the behcets diagnosis. That leaves me worried are they waiting for me to have a stroke? im only 27 so really worried.

Is it normal to do this? Not give you a label given though its pointing in the direction of an illness?

Sorry for the long ramble

Lulu xxx

elnafinn

Aw Lulu

I am so sorry to read your story. I am devasted for you. I have a daughter not much older than you and I know just how upset, miserable and scared, weepy she would be feeling after hearing this news.

You probably know that there is the Behçet’s Syndrome Society who have a helpline and a forum as well as information of course.. The forum is not available at the moment as I understand it - I believe it is under review - but hopefully will be up and running very soon.

I truly feel for you and understand where you are coming from. I am wondering if getting a second opinion would be any good but I presume there are not so many Behcets specialists available.

The drug Colchicine is used for Behcets, perhaps it was thought it may suit you better.

I realise I can be of no help but I wished to support you after having read your post. It has all come as a shock. I hope that perhaps writing it down here may have helped you a tiny bit at least.

If it helps, please do keep in touch with us all here.

Love and gentle hugs to you

Elna x

barbara12

Hi Lulu
Like Elna I really do feel for you, I wish I could offer some help, but to be honest I know nothing about Behçet’s .
But I am here to lend an ear if you need to talk, I do hope you stay with us then we can at least support you.
You take care xxx

stickywicket

I feel for you too, Lulu. Somehow we all want labels. I guess they serve to make things seem more real. We feel we know what we're up against with a label.

Your doc seems a good one though and I'm sure, by not wanting to give you that label, he is acting in your own best interests. I don't know why. Maybe you could ask next time. Make a list of the questiins you have. It's always afterwards that the questions arise. :roll: But at least next time you can have them answered.

This is going to sound ridiculous but do try not to worry. They're not ignoring you so I'm sure the change of meds is considered to be what's best for you. You might even be better on it. I do hope so.

L1985

Hi everyone

Thanks for the lovely replies. Its my children i worry the most about but the future is outof my hands so will have to face whatever is thrown at me as and when.

Just wonder where i stand with things like life insurance? I havent been given the 100% diagnosis of behcets so dont want to ring them saying i have that as it will really effect my insurance. Plus dont want it to be void by not saying anything? Alreadyinformed them im under the hospital for investigation so hoping that ok for now until doctors are more definate.

I cant get a second opinion as not more speacalists in it and ppl travelled miles to see the doc,s isaw yesterday. Im really lucky to have a speacalist close by
Hoping in time things will be clearer
Lulu x x x

stickywicket

I hope so too, Lulu.

I wonder if CAB could advise about the insurance?

You know, the future is out of all our hands. All Mum's worry about their kids' futures. I was scared that, with all my years of meds and ops I mightn't see mine through to adulthood. They're now married with kids of their own and I'm still going strong(ish) :roll: .