Sticky Blood-Hughes Syndrome Support
8,347 members8,524 posts

What to expect?


I first posted here a couple of months ago and have been mainly lurking since. I'm currently waiting to see if I am to be diagnosed with APS. I've had two very high titre positive results for IGg antibodies as well as a myriad of symptoms and my GP thinks it's a possibility. I was seen by a prof who specialises in Behcets as it was thought it needed ruling out officially, and he noted Livido on my feet and legs, and he was the one who sent off the bloods that came back positive.

I now have an appt with Dr Lester at Birmingham at the end of the month and I'm really nervous.. I'm no stranger to the appt/medical system having been in it for the last 6 years, but this one to me has so much attached to it. One of my main debilitating symptoms is constant 24/7 headpain and migraines, and I've not found any preventatives that make the slightest bit of difference despite being seen by severe and difficult headache clinic for the last 3 years. The idea that maybe the headpain might be reduced by heparin is one that I cling to, as right now it's my only hope of relief.

I normally take a list of symptoms with me, but have seen people mention on here a kind of brief history/meds/specialists which I plan to get written up shortly.

I don't know if I'm likely to walk out of my appt with a diagnosis (not that I want one if it's not the right one!) or if it's going to be another of those utterly disappointing days where yet another hope of having some kind of life is dashed. I know that treatment for APS does not signal the end of the debilitating symptoms, but actually having the right diagnosis and treatment would make a change!

I'm also nervous of being treated badly, it happens time and again that the dr has the bedside manner of a brick being thrown through a window and I'm made out to be making a fuss about nothing. I'm young and that seems to really go against me as the expectation is that I should be well and running around, not spending days on end in bed and using a wheelchair and crutches.

Any advice re: what to take with me symptom/list wise would be great, and ways of not being so nervous around appointments would be amazing!

7 Replies

Hi fairypies - so glad you have come back to us, especially me actually because only thIs week I was told I might have Behcets! I will PM you with a list of the things you need to take with you so that you can be confident that you have all your ducks in a row.

I know exactly what you are going through as Im doing the same myself at the moment and there are a number of us in the same boat. Sometimes we actually dont end up with one thing but a number of things because symptoms can cross over but at least you are being investigated which is step in the right direction. Knowing you have all your information with you on the day will help you be as relaxed as you can be. In the end I always feel it will be what it will. Either this Doctor will be the right one and he will put all the pieces of the puzzle together or he won't but I have come to the conclusion that we cant change the course of that process we just have to go along with it if you see what I mean. Its that attitude that makes me relax more now when I see new Doctors. :-)


Dr Lester is the one who was willing to diagnose me on clinical evidence basis - where as every other person i saw shyed away and didnt want to get involved - Birmingham Womens/QE Hospital is a main teaching hospital - and he knows his stuff - I would just double check with his secretary first before the appt that you are definately seeing him and not a colleague x


What can i say ? I have been in your situation so many times, the frustration is unbearable so your in panic mode before you have entered the consulting room.

I dont know of a youngster that would choose a wheelchair or sticks rather than a life.

The illness you have mentioned is one i have not heard of so i shall look it up, You speak of a rash on legs & ankles i have the same ! It itches like mad & my heals have gone sort of a purple colour, i aslo get a rash on my face that resembles the Lupus rash.

Now listen. these people you are seeing are doing a job they are not gods & have no right to talk down to you, i had many years of putting up with that.

I had one consultant put in my records i was a waste of time & hospital money that comment was read buy every consultant i saw there after. It followed me like a bad smell & blocked my way forward for diagnosis.

I took the consultant to tribunal & won my case what a victory plus he was reprimanded.

Maybe you could take someone with you to lighten the situation.

If not happy with a consultation you can ask for a second opinion.

You can ask to see your notes as i did for a small fee.

Do make notes if able to take along, If you get a day where you think you look odd or different take pics with your mobile as i did that way they cant say it is all in your head.

You have to be strong due to the limited time we now have in consulting rooms & make sure you use that time to your advantage.

I was just like you hun the amount of times i came out of a consulting rooms in floods of tears but not anymore i am now angry & speak up for myself.

If your consultant was stood behind a shop counter serving would you be as nervous, the answer is No, some use there position to bully & we cant let this happen.

Your consultant is no different from us he belches & passes wind as you & i do.

Stay on the site for support, read others stories, make up a picture of what you think might be going on with you & ask for it to be considered or ruled out.

Why do you think we are all on here ? We all are desperate for answers & wont our lives back,...... Hugs & Kisses.from a new friend.


Hello again, I have just read Emma's reply to you.

It is great that she knows this consultant looks like you are in safe hands & might have hit on the jackpot !!

It sounds as if this consultant knows his stuff, this sounds promising i could do with seeing him myself.

I hope Emmas words have helped you to relax so keep calm chick cos i think your onto a winner with this one.

I am smiling from ear to ear at Emmas words, its great news.


Thank you all so much for your helpful replies :)

APsnotFab- if there's anything I can help you with for any appts re: Behcets etc then please shout! I saw a couple of doctors about it.

Emma- I'm glad you had a good experience with him, that puts me a little at ease! My GP did specifically refer me to him, not his team but I will try and remember to phone and check!

Jillymo- thank you for your useful words on doctors, I do have to try and remember that they're just the same as any of us... I've dealt mainly with neurologists over the past 6 years and they can be the worst for their "god complex" in my experience! Sometimes drs seem to forget they're playing with people's lives, their hopes, their concerns etc.

My dad's going with me to my appt, so that's always helpful :)


Wise words jillymo - you could always sit in front of these consultants and imagine them sat in a nappy - that would at least make you smile and relax!!! If you get nowhere with Dr Lester (which I very much doubt) then I would ask for his referral to London - I think hes very good and thinks outside the box and looks for evidence of other things without you even knowing! good luck and let us know how you get on x


and.... as a footnote, do feel free to print off some of the useful papers for doctors, off our HSF site. These get used a lot and will go well with your notes on medical history that you are writing up. Mary F x


You may also like...