To get taken seriously

I've had oral ulcers and really bad genital ulcers on & off for two years also just getting small nodules like follulicolitus on arms , also achy joints - but get the flare ups say every 3-4 months ... Been to university hospital in aintree for one appointment with a registrar ( not seen the Proffesor yet ) ..got a follow up appointment in 4 months .been prescribed colcachine and betamethasone valerate Anyway he says that I have probable Behcets but only mild at the moment - well it doesn't feel very mild to me ! It's agony ... Then this guy sends letter to my doctor ( Gp) and says if no change in 4 months we will Probaly discharge him from our clinic !!! Feel let down because just because my symptoms have not progressed yet to neuro or eye problems yet he's gonna ditch me from clinic ... Feels so dismissive ! 10 days after first appointment I attended Behcets clinic with bad flare up ( no doctors present ! ) nurse says she will document symptoms ... But I still feel really short changed .

8 Replies

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  • I thought Aintree was supposed to be one of the new centres of excellence in the diagnosis & treatment of Behcet's!! Perhaps nobody has told them that they are supposed to BE excellent.

  • Perhaps it was just a case of me expecting more from them on my first visit or me not understanding the procedures and process on how they work out your symptoms ... Or me just feeling sorry for myself Lol. Thanks for the support though - needed it !

  • Firstly, I think it's important to point out that not everyone gets eye problems or neuro symptoms. You may not ever be any worse than you are now, and could feel a lot better. There is no cure for BD yet, but it is controllable and manageable and many people live normal lives.

    However, you are clearly not well and you should be monitored. You may need regular blood tests because of your medication.

    Is your GP supportive? If he/she doesn't know much about BD the Society have information for professionals.

    You could ask your GP to write a letter asking that when you go back in four months could you please be seen by the Professor you were referred to and take it from there. Bear in mind that things said at a first appointment by one doctor will not necessarily be the same things said by a second doctor or a nurse. It may be that your case IS mild compared to some other cases that they see, but you are there for YOU, not to be compared to others, so I wouldn't let that get to you.

    The letter to your GP says you MAY be discharged in four months, not that you will. If this is a BD clinic and you are under the care of a BD expert (even though you haven't seen him/her yet) then it would make sense for them to continue to see you until your condition is being treated satisfactorily. This is something you can discuss next time. The right meds for you can take a while to find. You could contact your Professor's Secretary a week or so before the appointment and double check you will be seeing him/her - you will have time to ask your GP to intervene if this is not the case or to find out why and if the person you ARE seeing is appropriate.

    Go to the appointment with someone else if you can - sometimes it's hard to remember all that was said afterwards and the support of someone else can be very helpful. Take a few typed or writen bullet points - not complaints about last time, but facts about yourself - skin/joints/severity/frequency/treatment, what has or hasn't helped. Keep it concise, you can elaborate if asked. Add a few short questions - IS this BD? (they may not know yet, it can take a while to diagnose as there are similar conditions) what is the treatment expected to do, etc. You can give all that to the doc for your records then you both know what was said.

    You feel unwell and are probably worried and feel let down, but try and be patient, assertive and pro-active, as these things can take time to sort out and you are just beginning this particular journey.

  • Thanks for your fantastic reply and sound advice I have already contacted the Proffesors Secratary and will make sure I will get to see him ! And I will now consider taking someone in with me too - I do have a terrible memory :0)

    Thanks again .

  • I'm using betamethazone valerate.. Seems to do the job well.

  • Hi - It may just be coincidence but I stopped using panty liners and changed my cotton undies every couple of hours (to stop moisture building up). It was easy for me as I work from home but if you are desperate enough you will try anything. Lesley

  • I was in a similar situation as my eye flare ups were not seen as BD. However, I had ulcers, sores, joint issues, gastric issues. It took about 2 years to get the diagnosis but I've had it for over 20 years. I'm knocking 50 now!

  • Just a quick follow up question. Did you mean Colchicine? I guessed there was a simple typo in your post. I would be keen to know how you got on with this. I tried it but it was not for me, I had severe reactions to it and had to stop.

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