1st appointment at Aintree - centre of excelle... - Behçet's UK

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1st appointment at Aintree - centre of excellence it was not

RadRadiographer profile image
RadRadiographer

I had my first appointment at Aintree earlier this week. This was a big thing for me as I’ve been waiting months to start the process of finding out what is wrong with me. It took me an hour to drive there and 45 minutes of going around in circles in the Multi-storey car park to find a space.

The appointment itself left me feeling deflated and unsatisfied. I feel as though I was totally unheard by the doctor.

She asked me questions but moved through them so fast I was unable to explain exactly what I’ve been experiencing. As I was explaining my symptoms, she moved to the next question as though she was trying to get through her list as fast as possible.

I’m currently going through a good patch with my symptoms after having a massive spiral downwards a few weeks ago. So there aren’t many physical symptoms to see. In particular, my skin rash on my arms and legs has really gone down so it just looks like small red follicular bumps.

The doctor glanced at it and didn’t acknowledge me when I tried to explain how it looks when it gets bad and that it can be so inflamed and painful. She just dismissed me and told me that it was nothing and even she has a rash like that.

She didn’t ask about my fatigue, headaches or my eye aching problem. She asked about previous issues/diagnosed problems with my eyes and migraines but again I didn’t get a chance to explain new issues.

She had a quick feel of my joints and I confirmed they weren’t painful at that moment in time.

She basically told me I didn’t have Behcets but she supposed they could do a pathergy test and take some blood tests.

She showed me to the blood room for my test and then told me she would call me in 3 months.

I have to email some pictures of the arm after the pathergy test and I feel as though I want to mention all this in the email. But I don’t want to rock the boat and make the situation worse. But after basically being told that I don’t have Behcets and not being told where else I can seek alternative help. 3 month is a long time.

21 Replies

I’m really sorry, that doesn’t sound at all satisfactory.

I’ve never attended the national centres but it did take me a while to get diagnosed. Eventually I was diagnosed by a gynaecologist after a biopsy of a genital ulcer - ouch! However, even then my own GP wouldn’t accept the diagnosis. It got put on my records though and I changed doctors.

Having the correct diagnosis is really important in order to access the correct specialists and treatments, a well as being very important for our mental health. We know that there can be a lot of cross over symptoms in autoimmune conditions, which does make it tricky at times. However, it sounds like your appointment didn’t meet the standards you should expect.

One of the most difficult things about this disease when it comes to diagnosis is that symptoms come and go - and quite often they’re not there when we see the doctors. I always try to take photos of any rash or visible symptoms so I can show them at appointments. Obviously you can’t do this for things like joint pain, but you could keep a symptoms diary and take it with you to refer back to during appointments.

If it was me, I’d probably write an email pretty much saying what you’ve posted here. And perhaps noting your most recent and recurring symptoms - so they’ve got that on record.

Hopefully you’ll have another appointment in 3 months time. I know it seems like a long time but at least you can prepare for it, take any photos and details of flare ups, and hopefully you’ll see a rather more sympathetic doctor! Good luck x

Thanks for the reply.I have kept a symptom diary, but there wasn’t time for me mention it and no opportunity to show it.

I’ve tried to take pictures but the are hard sometimes and end up blurry- I’m not the best photographer and some of the places are hard to picture. I don’t have anyone to take the pictures for me.

I know it is hard to diagnose and there are many other things it could be.

It was just frustrating that she basically said it’s not Behçets but when I asked what I had to do next to find out what it was, she basically told me we aren’t discussing this now and I have to wait for the phone consultation in 3 months. Considering I have been trying to get my GP to help me for over a year and I’ve waited 4 months for the specialist appointment, waiting 3 more months before I can carry on to get a diagnosis is annoying

Thanks for clarifying a bit more. I really do feel for you.

I wonder if you could get some advice about how to deal with this, and what more can be done with regard to getting a diagnosis, from the Behcets Disease society?

I spoke to them in the early days by phone and they were very helpful. They had a volunteer help line - I don’t know if they still do.

As far as telling you it’s not Behcets - well, how can she be so sure if she hasn’t seen your symptoms herself, failed to discuss them properly with you , and there is no definitive test anyway?

I’m sorry I can’t be more helpful - but I really hope you can see another specialist doctor soon to discuss this with. Keep us posted and maybe others will be able to advise better x

Hi Rad, I think we’ve all been in the same situation as yourself. I’m a grown woman and still am reduced to feeling like a silly schoolgirl with certain doctors who dismiss every symptom. The thing is to just persevere and if possible just shrug it off or if not even complain that you are not being taken seriously. I had to change doctors from one top specialist because of his dismissive manner. Even when I complained about it to his colleagues they wouldn’t believe me until on one momentous occasion they saw him in action. I’m not sure how the CoEs work over there but I wonder if you could write and ask to be seen by another doctor - stating the reasons why as above. I’m sorry to say that on your ‘journey’ this will probably happen more than once. The photos are very important as you probably realise. Can you buy one of those ‘octopus’ stands for your phone and start practicing. My neurologist said to me one day that I had the best photographic record he had ever seen and he didn’t even particularly need me to take notes (I think it was a bit of a backhanded compliment but I’ll accept it anyway). Grit your teeth and hang in there.

On thinking about it she shouldn’t be in that position and unless someone says something nothing will be done about it. What’s that saying, “Speak softly with a big stick”. You could start off with something like “I don’t wish to complain but I had an experience which I think needs bringing to your attention...” My policy is not to burn my bridges because it is such a rare disease there is a very limited pool of resources.

Cheers Lesley

Hi,Sorry you have been left feeling this way after your appointment. I cannot stress enough RadRadiographer the importance of photographs regardless of where they are and even if they are not that great, when consulting with specialists they are important, I was ignored for decades and brushed off every time regards my oral and genital ulcers each specialist never joining the dots up, oral see dentist, genital gynaecologist but not anything there at time of appointment 20 years ago... joints orthopaedic, skin dermatology it was me seeing yet another rheumatologist who eventually diagnosed me with Behcet's and at the same time Ehlers Danlos and yet her colleague who I saw 12 months earlier discounted the ulcers completely as having nothing to do with his field of work.

My suggestions is to keep your reply short, simple and factual, list your symptoms even if you are unsure of the exact medical name without any narrative, list frequency and duration and if known any triggers. Photos provide a better idea but even these can appear less severe than they actually are. This is exactly what I did with the rheumatologist who diagnosed me. Whatever photographs you send even if you have to send several emails do so but ensure you tell them this is what you are doing.

When you email back to the consultant please be sure to ask what the blood tests are for, not only for you to know but also for the person who referred you there in the first place which you can then discuss with them if you have another flare up in between now and 3 months. I would also suggest if you have any major issues during the 3 month wait to also email photographs.

There is nothing wrong with finishing by expressing how anxious you felt at your appointment and found it difficult to express your symptoms during you appointment.

Not sure exactly what your symptoms are to be referred to the centre but whoever referred you must have considered you possibly had Behcet's. I do feel for you it is very hard when you have waited so long to find out why you feel the way you do and hope for answers and treatment. The blood tests will hopefully provide some answers for you.

Even though diagnosed I continue to take photographs of each thing and write about each flare up, it is my proof that things are not right and I believe medication needs to be adjusted or changed and can discuss with my consultant rheumatologist and others involved in my care.

Hi. Sorry you had such a bad experience. I have been fobbed off by doctors so many times, I know how soul destroying it can be.

At my first CoE appointment they were VERY focussed on my ulcers. I found out later this is because Behcet’s without ulcers is virtually unknown. I didn’t have any mouth ulcers at the time of the appointment, but I did have some photos. They were indeed really hard to photograph, I had to work at it for days and use a small digital camera with a flash and a macro setting rather than my phone. I had also managed to get some photos of scalp scores (I had to get someone else to take those), my rashes at their worst, and swollen joints. The people at the CoE said the pics were very helpful indeed in aiding their diagnosis.

Maybe you could use the next 3 months to try and capture some images? If it turns out to be something other than Behcet’s the pictures will still be useful to other consultants.

It is very frustrating, though, to feel like you have to become a medical photographer to be believed. It would be much better to feel you are being listened to. To go to the effort of keeping a diary and then not be given the opportunity to refer to it is disheartening. The ‘I get a rash like that’ comment sounds particularly grating. It reminds me of ‘we all get mouth ulcers’ comments I heard so often when I was young that I stopped telling doctors about my ulcers. No wonder I wasn’t diagnosed until I was 56, despite being ill since childhood! I saw a TV programme recently where a young woman of around 20 had been very ill for several years, and nobody could work out what was wrong with her. During a consultation, a rheumatologist noticed a rash on her neck. The patient had not seen it as significant enough to mention, but it turned out to be the key to her diagnosis, and eventually getting her life back.

Hang in there. Don’t let one meeting with one consultant - who may have been a poor practitioner, or a good one on a very bad day - scupper your efforts to get your illness identified. It is possible that you might be able to get a second opinion from somebody else at the CoE. Did you only see the one person? One of the reasons for setting up the CoEs was so that patients could see several consultants during the one visit. I saw 3 on my first visit - an eye specialist, a mouth specialist and a rheumatologist. That process may well have changed due to Covid, of course.

Three months may seem like a very long time but actually in the world of Behcet’s CoE’s it’s not. People generally get 6 monthly appointments at first, reducing to yearly when the illness is under control. The person you saw will write a letter to your GP at some point and copy you in. Once you have that, you will have some action points for your next appointment with the CoE and also some things to discuss with your GP as to what the next move should be if you are not thought to have Behçet’s.

Wishing you strength and the very best of luck. Keep us posted.

Yes, I only saw the one doctor. That did surprise me as I expected to me poked and prodded by several different doctors - I researched the centre before my appointment so I would know what to expect. I was actually reassured before going as I thought I would see the different specialists on the day and it would be thorough enough to provide me with some answers. Instead I saw the one doctor, who basically dismissed me and I didn’t get the chance to express everything that has been happening to me. She made me feel like I was making a big deal out of nothing. But I tried to explain that it surely must be connected - it is too coincidental that all these seemingly random symptoms all appeared around the same time. And they each flare up in the same pattern every-time. So they must be connected somehow.

She showed me to the blood room and then disappeared to never been seen again.

I kind of hovered around after my blood was taken, but the nurse told me if I wasn’t told I needs xrays then I could basically leave.

So I left and basically was left feeling like I had wasted several hours of my life, wasted patrol driving there, wasted a day of annual leave (that’s I had to beg my manager for) and got stressed about the stupid lack of parking. All for nothing

Hi RadRadiographer. I’m guessing by your user name you are a health professional yourself??

Firstly I completely concur about the parking at Aintree it’s hideous and at the moment it’s very very quiet at out patients.

On a side note there is a private carpark across the road from A&E, it’s £3 for all day and the chap almost always had spaces.

If you’ve been given an email.

If you have been given an email address, write it all down and send it in the email with any photos you have of your body in flare up.

If it’s in writing they will have to address your concerns. My daughter is transitioning from Alderhey to Aintree and has seen Professor Moots at Alderhey. He is excellent and I don’t think he would be very happy if he knew a patient had an unhappy experience . Was it an SHO or house officer you seen? Do you know what discipline they where from?

What I’d say about Junior Dr’s is that unless Behcets or other rare autoimmune conditions is their chosen specialty they have very little interest.

My daughter was almost discharged by an SHO once. The consultant was incensed and couldn’t apologies enough.

What other symptoms do you have? As you never mentioned ulcers or abdo issues?

You could also consider contacting PALS & Prof Moots direct if you feel the experience warrants it. Good luck x

Yes, I’m a diagnostic radiographer. I retrained a few years ago - I was a nuclear physicist before. - I get gastric issues (Bloating, acid, diarrhoea, gurgling etc that I can’t find a pattern or connected cause for its just random)

- headaches that are very different from my migraines (I’ve had migraines for around 12 years and am very familiar with them and these headaches are nothing like them), - painful and angry mouth and genital ulcers (that always coincide with each other in when they appear so I have a hard time believing they aren’t connected)

- I get an aching in my right eye that randomly comes and goes

- my joints and muscles all ache and sometimes my hands and feet feel swollen and very stiff

- my fatigue is off the scale. Lat time I felt very bad a few weeks ago, I was exhausted just getting up, showering and drying my hair. That is obviously not normal

- I have a skin rash that flares up with the rest of my symptoms on the top of arms/shoulders and my thighs. It starts looking like red bumps of my follicles and then some of them get very angry and bigger. They look a bit like ache and whiteheads. Nothing will get rid of them (not exfoliating or moisturising) and I have to just let them calm down back into small red spots. I’ve never had this rash before all my other symptoms appeared

The doctor I saw introduced herself. I’m disappointed in myself that I can’t remember her name - I was very stressed as I was late to my appointment due to the parking fiasco (45 minutes going around and around the same multi-storey). But I do remember she said she was the registrar. Other than the nurse who checked me in and took my blood, she was the only professional I saw

I use a torch for oral ulcers and mirrors to get to see them, none of the pictures ever do our condition justice but absolutely necessary, when you mention your flares to any of these consultants it's like we take these in our stride, they are painful, make you miserable, dominate your life and all we ever ask for is help. Please do not let this person put you off speaking up, we are the only people who can do this. My husband always says be a pest and make these people answer there behaviour. Make sure you ask questions in your emails like can you please advise what treatment I am to use for genital ulcers etc. If they do not answer ask again

Oh no not a dreaded registrar I have dealt with 2 of these the last one I told her point blank I had come to attend an appointment with a consultant and that is who I am going to see so if she is not available give me another appointment when she is free. My consultant apparently was running behind in her appointments and this registrar was helping out... the other was when I was admitted as an emergency, turned out I had a hidden inguinal hernia that was horrendous but because it was made up of omentum I was released from hospital by this pilchard with no advice on how to manage my continuing to pass out, told had to wait for appointment for surgery, my GP was furious, in the end decided to have the operation done privately at British hernia clinic, consultant there was astounded the way I had been left to manage. Took the NHS 6 months to get back to me with an appointment for surgery...

Have you seen this? It sounds like your treatment was not in line with Professor Moots’s ethos. m.youtube.com/watch?v=EcOO3....

Yes, I searched online for information before I attended my appointment. Maybe I was expecting something different or too much based on what I thought would happen during my appointment. All the information I found reassured me that I could receive real and useful help on finding our what is wrong with me.So it may not be Behçets. I wasn’t expecting a clear yes or no answer on this appointment. But I was expecting to leave feeling as though I’m moving forwards towards a diagnosis (whatever this ends up being).

Instead I feel as though I’m going to wait 3 more months until my next telephone appointment with this registrar, and then be back at square one with no answers.

Everyday is more of a struggle for me. And when my symptoms get worse, I can’t do anything at all. It’s having a massive impact on my job, which I can’t afford right now. I’m a frontline nhs worker, and the understanding from my managers only goes so far. Especially as I can’t seem to get any answers, let alone a confirmed diagnosis.

Hi Rad you mentioned that you get migraines as well as a different kind of headache. I’ve been told that I possibly am having migraines mixed with trigeminal neuralgia, although another doctor says it’s not TM rather orbital neuritis. Sorry to waffle on, are you able to describe the difference between your two headaches please? I’m happy to start a new thread if you like. Many thanks Lesley

I’ve had migraines for over 12 years. There is always a certain feeling that starts in the same place, and then bright lights hurt and I feel sick. Normal painkillers don’t help and I have to take my triptan medication.These new headaches are just pain in a totally different place, and the pain travels down the back of my head and into my neck

Definitely contact PALS xxx

I am so sorry, This still remains my main concern when people have had very bad trouble getting a diagnosis, The last thing they need is this type of barrier relationship.As patients of this condition they should be taking people along with them.

I still do it now take pictures of everything and anything locally they look at me like I'm a total nutter. But as various things unfold they finally see the reason. The latest being I was told everything was fine in the lymph node in my groin they even done an ultra sound and yep all fine.... 4 days later the entire area tripled in size and pus oozing out. Owing to COVID-19 they put me in a side room cut the leg and pulled out a lovely cyst very much like the ones that were in my jawbone.

they were baffled how the x rays .scan missed it but tried to tell them for me this is normal its only when they cut and look direct these things are visible.

I recently won the battles with my local health board to get the funding for Humira back

and funding to carry on at the hospital of my choice. I know my long term hospital is coming to an end but they have put in place a stop gap measure until something more long term can be sorted. What I cant understand is why these centres just cant take over patients in need of new place, given most consultants would have no problem sending a summary of a patients notes. I really wish I could post the pictures I've taken over the years but they are so graphic and you still get doctors utterly clueless.

Know its easy to say but like others I went over 2 decades until they finally found out what was wrong with me. The prospect of going through that process all over again I honestly couldn't do it. There's no wonder you are feeling deflated and sorry its plain rude when you are trying to explain to someone what is going on and how its affecting you and they are making clear its going in one ear and out the other. Bechet's is one of those conditions one size doesn't fit all. Yes it might have a core set of symptoms they use for a diagnosis but there's a whole host of other things that are also Bechet's related just as important.

So sorry to read that your experience was a disappointment.

Do you have any ulceration in your mouth or genital area ?

Why I’m asking this, is that an acquaintance of mine had similar symptoms to yours and after a biopsy it was diagnosed as

“Mucous Membrane Pemphigoid “

Not often diagnosed ( bit like PMR , not heard of regularly)

Was your Doctor at Aintree a dermatologist?

YuliK 😷

So, after much contemplation I decided to send an email outlining my disappointment with my appointment. I sent my pathergy test photographs and an attachment outlining my symptoms so they have it writing.I thought for a long time about what I would say, but just decided to be honest about how the interaction made me feel. As a frontline NHS worker myself, I would hate for a patient of mine to feel as I did after my appointment.

I really hope it doesn't cause to many waves, as I don't want it to have an impact on my access to the very small world of specialists. But I really feel as though I needed to be heard.

I have had the exact same thing happen to me at Liverpool but I also have a positive HLA-B51 result so they are monitoring me but convinced I don't have Behcets so don't give me any proper treatment just creams/ moutjwashes etc for my sores. This has gone on for about 4 years now, although having said that, my appointments over the last 12 months have been over the telephone due to covid. I have also been seen by Professor Morgan in Leeds who is also convinced I don't have Behcets despite me showing years of photographs of my symptoms, as my symptoms are either only mild when I physically have an appointment or they'll say they 'don't fit the classical manifestation.' I have spoken to my GP and he says he has known me for almost all my life and has seen me whilst I have had symptoms and knows my full medical history so no matter what they say he is treating it as I do have Behcets although he isn't able to prescribe any of the medications as they have to be signed off by a consultant and can only manage my symptoms as they arise. I'm now thinking of paying for a private consultation to see if I have any luck that way. They say money talks! Good luck and I hope you are able to get a better consultation. I have spoken to Dr Nair at Liverpool the last 2 appointments and he has taken the time to listen and tried to be helpful so it might be worth you requesting to see him.

My email has apparently been passed over to Dr Moots, so we’ll see what happens. I‘m sorry this has been your experience also.

I understand that there is a good chance that I don’t have Behçets. I don’t want a diagnosis to be slapped on me as a best guess as to what it could be - I want to find out what is actually wrong so I can fix it. But for this to happen, I need an expert to assess my symptoms and then refer me to someone else if necessary

I have heard of colchicine being used in some cases as a kind of indicator i.e. if it improves symptoms then it can be assumed they are Behçet’s related.

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