What happens after diagnosis?

[kimber1234]

I was diagnosed yesterday, after having problems for years. I am already on immune suppressant drugs and steriods and pain killers, but still having trouble, so they are changing my meds soon. Also had a lot of blood tests done, more then usual.

[tamirra]

Hi, welcome to the forum, you will been seen by numerous specialists who deal with whatever symptoms you may have at present and every new symptom you get,it can take a while for them to find the right meds to suits your symptoms so dont expect too much too soon, you will have bloods taken on a regular basis, i will leave all the more depth info for someone else, although my daughter has had symptoms since the age of 17 she is now 25 and we still cant find a drug to suit, so a more experienced patient can explain to you all you need to know. Good luck, by the way this site is wonderful if you ever need help, like myself on many occasions with my daughter. x x

[Hidden]

Hello and a warm welcome,

you've come to the best place for help, advice and support. There is a search box top right that can help you to find answers to questions you may have - I believe there are some other posts from newly diagnosed patients for example.

What will happen next can vary - if you haven't already had a look around the Society website, you may find some useful info there, such as this, which is for newly diagnosed patients:

behcets.org.uk/Documents/we...

Who you see and where you see them may depend where you live, in the UK there are now 3 Centres of Excellence where patients can see specialists all at the same place in one session, rather than travelling back and forth to see different people, different days and times. There is some information about it here: behcets.org.uk/menus/main.a...

Also depending on where you live, there is a conference this Saturday in Peterborough where you can meet others with BD and find out all sorts of things, details here:

behcets.org.uk/menus/main.a...

If you haven't already, I highly recommend that you join the Society, they have a wealth of information, advice and support and we can help them with things like fundraising, which in turn benefits us.

Finally, if you post a new thread or blog, please put some tags in the tag box as this helps us all to search for subjects we are interested in. Thank you.

[andreafm in reply to Hidden]

Excellent advice Tigerfeet......I couldn't have put it better

and welcome to the site kimber1234 I hope you find it helpful

Andrea

[GrumpyD]

Welcome

I am also not long officially diagnosed despite suffering for some 25 years. As others have mentioned, you will be seen by various specialists according to your symptoms. I wouldn't worry about the blood tests, I have weekly tests plus others at the hospital so that is quite normal.

They will soon find the correct treatment to suit your specific needs.

Dave

[Denise--]

I was diagnosed in April and have struggled with doctors. I told my GP that I was unbelievably tired all of the time and he said 'maybe you're overthinking things after being diagnosed with behcets?'....after a blood test I found out that I had an underactive thyroid on top of Behcets. My advice to you is to tell your Doctors everything ! I recently had a lot of blood tests done too....they are good to show the docs the facts of what is happening and will tell them what way to treat the problem. Stay strong!

[Hidden]

Denise, sorry your doc wasn't very understanding, so often the case unfortunately.

Having regular blood tests is of course very important, and I am not contradicting you personally regarding the results showing the facts, but I think it's worth pointing out generally, in case members here do not know, that sometimes blood tests come back negative, inconclusive, borderline, ie, not enough information for an inexperienced doctor to interpret correctly. If this happens to any of you, don't despair. Fortunately there are many good docs who can diagnose and treat on history and/or presenting symptoms, but not enough yet!

As Denise says, stay strong, because it is as important for us, the patients, to inform doctors, as it is for them to treat us correctly and sometimes we know more than they do!.

[Denise-- in reply to Hidden]

Yeah that's true! I meant that sometimes blood tests can show you're doc more than just your word (especially in my case when he did not believe me!)

But yeah blood tests are just the start, nothing more frustrating when you say you don't feel well and they say 'well your bloods are normal'....grr!

Tell them everything and they'll know what to test for

[SuenMike]

Hi there.

I think most stuff has already been said. We all know what you are feeling, and the despair which arises when being told that you are suffering from an incurable condition.

Use this site to rail on about things which worry or frustrate you as we are all in the same proverbable cart.

You will learn that you are often more in the know about your disease than your doctors (especially your GP). The society have very good pamphlets which can be given to your GP because they will need to know about BD as most have not come across it before.

You have cross the line now, and at last a diagnosis has been made, I wish every good luck in the future, and remember we are all here for each other.

[Hidden]

Welcome to the forum, like everyone else has said the society website is fantastic and will help you through confusing times. I too have been recently diagnosed so know how daughnting it can be. I can't answer what will happen with your meds but you have found the right place to give you support. x x

[LL40]

Hello Kimber1234, welcome to the site, I am a newbie to the site myself but I would say keep a diary of symptoms to show to all of your doctors involved in your care. A relative of mine was recently diagnosed and has several doctors from differing specialties involved in their care. We have found that depending on who you talk to, the doctors don't always appreciate the significance of what you are telling them as it may not be their area of expertise. My relative also had some strange neurological symptoms and it would have helped to have a note of how often these were happening. At one point they were told by a GP to 'man up' when asked re crippling headaches need I say any more!

[kimber1234]

Thank you for your replies.

I been under their care since 2007(long time) and they have now decided its Behcets. I had quite a lot of blood work done on the day(we see how that turns out) I do suffer with tremors pretty hard going that one(I avoid peas) dropped my cuppa tea a few times lol

But their concern was all the red lumps everywhere and ulcers in my mouth, as well as asking me about bowel movements(have we no dignity anymore lol)

[kimber1234]

Im the one that normally says nothing(hush it will go away soon) they found the problem.