finally a diagnosis!

L1985

hi everyone

Finally got a diagnosis this week. I have behcets which is supposed to be really rare. If anyone onhere has it id be grateful for a chat as im very worried about it.
Thanks lulu x x x

frogmorton

Hi Lulu

l hadn't heard of it but gave it a quick google. I am so glad for you that you have a diagnosis in some respects.

At least with a label you can get informed and be treated correctly.

But l expect you might also be feeling a bit shocked too - l know l would be. Some gentle hugs for you

Love

Toni xx

L1985

Hi hun

Yes very shocked and very scared. My vision is blurred at the moment and i worry about losing it. Only way i can deal with it is to think silly things like i love pugs and always wanted one and wonder if they can be trained to b a guide dog. ?.....my sese of humour if i wasnt like that id cry
I know its unlikely to get to that but i still panic.

Panic about the risk of bloodclots too. Trying to stay claim until i have seen the doctor who specalises in it.

frogmorton

Hi Lulu

that's so the best way to look at it.

l am like you once you know which you do now, you can gather more and more information. Then you start to feel a whole lot less frightened. Now they know they WILL do their best to look after your eyes l am certain.

Same with the bloodclots....the specialist will tell you what needs to be done. you can't do that much yourself can you other than try hard not to worry. Now that was easier said that done :roll: sorry.

Keep talking too that helps. Well it helps me, and places like this are the best because we aren't family who will be worrying themselves wont they?

As for the 'guide-pug' - why-ever not? they are bright enough dogs aren't they?

You take care and be gentle with yourself just now eh?

Love and hugs

Toni xx

CJHunter

Hi LuLu,
Sending u some ((((())))) and positive vibes.xx

dreamdaisy

Firstly, I am so sorry to hear that you have something so tricky, no wonder you are feeling rather shell-shocked. (()) Secondly, hopefully you will soon start to feel a little better in yourself as you now know what is going on. Knowledge gives much more strength than ignorance and I hope that when you see the specialist he will be able to put your mind at rest (at least to some extent) and offer some treatment which will help. None of us knows what the future holds and that can make life very uncertain but at least we all on here share that in common: the diseases may be different but we all have those fears and worries. Thirdly, (()). I wish you well. DD

pinkbritishstars

Hi

Really sorry to read about your diagnois but I agree with Toni that at least they know what it is and treat it accordingly.

Keep talking to us.

Pink x

barbara12

Hi Lulu
I am sorry you have something quite rare, but happy that you have had a diagnoses and the treatment can begin, I really do wish you well with everything.
And like Toni says we are always here for you to talk to.
Sending you loads of hugs (((((()))) and love xx

stickywicket

It is better to know what you are up against, even if it doesn't necessarily seem so at the time. I, too, had never heard of it so I had a Google and found this Patients' Guide for Patients which might help. http://www.behcets.org.uk/Documents/web - patient guide.pdf
It will be very difficult for you right now but try to live in the present. The future is unknown territory for all of us and, by worrying about it, we only mess up the present.

L1985

Thank u for all the lovely supportive messages it means alot.

The rhuem i saw asked if i had finnished my family i said no we would like one more and she pulled a face. I have two children one girl one boy i cant decide if i shoukd just be grateful for what i have......which of course i am.....or still try for one more like we would have. Im only 27 so no rush for another and we havedecided to wait two years 18 months on meds then the 6months off providing im better then i am at the mo. Really dont know what to think.

I have my appointment through this morning to c the bechets specailist its in 4weeks time so ill ask there

frogmorton

Lulu

as you say no rush to decide about extending the family.

do let us know how you get on with the specialist. 4 weeks is not tooooo long to wait.

Love

Toni xx

L1985

Yes ill let u know what happens. Waiting to have a min to myself so i can write down strange things i had as a child/teen and recent illness to see if they are related. For example when i was 10 i had impetigo on my leg which went all ulcerated and weeped and i was covered in red spots can still remember the pain. Anyway recetly my daughter had impetigo and it was a small spot i didnt even realise it was as i expected impetigo to be like mine was as a kid so now wonder if that was wrongly diagnosed.

I have had all sorts of strange things on and off.

X x x