Anyone been to Bechets clinic in Cambridge?

I have been suffering for years with different symptoms. Over the last few years they have got more intense. Really sore ulcers on my tongue, now getting these every 2 weeks which are very painful. Ulcers and sores 'down below'. Severe, constant headaches. Rashes on my back, face and chin. Upset tummy frequently, eye infections and constantly feeling faint. After several consultants and gp appointments I have been told I could have Behcet's disease. I have been given an appointment but not till December dont know how much more I can take of this. Has anyone had an appointment at the Cambridge clinic and had any success with treatment? Any advance would be greatly recieved. Thanks in advance.

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  • Oh and I also suffer with my heart!!

  • Hi Kezzle, I can't believe how long they take to diagnose Behcets in this country. Until you see a Doctor, there are a number of things you could do to help yourself as far as the ulcers go. First I think you should contact Zoe Lovett, she is amazing with the advice she gives and she is in touch with key Doctors and nurses who help her and others.

    Bicarbinate of Soda is a great help with ulcers (below as well). Just dilute some in a cup and swirl it around your mouth and also swab down below. It neutralises the acid of the ulcers and so kills the pain for a while. Ask your GP to prescribe Kenalog in Orobase for both lots of ulcers as well, it really helps with the pain. I can't advise about your other symptoms though. Sorry you're feeling so low. If I was you I would get more pushy with your GP. We have all had to fight for our health and push the Doctors. They could also refer you to the Center of Excellence in London, they know all about Behcets.

    I was diagnosed in Zimbabwe 39 years ago and have been in remission for the best part of those years. They gave me Steroid injections for 6 months.

    Hope you find help soon.

    Hugs

    Lyn

  • hi am in Zimbabwe and would like to know how u were helped i have BD and was told about it in 2010 when i was doing my Final year at varsity

  • Hi spear. Gosh I am not sure about any of the Doctors in Zim now. I was diagnosed 38 years ago there and had a marvelous Greek Dr who sent me to a Specialist who had just come back from a conference about BD. Whereabouts are you, Harare or Bulawayo? If I were you I would try to search on Google for any other BD patients in Zim and take it from there. Otherwise you can Google behcets.co.u. or org and you will get lots of information about BD. there. Are you on medication for it? Who diagnosed you? What medication are you on? If you have ulcers in your mouth as well as genitals, and you don't have medication yet, I would try to find a Dr to prescribe "Kenalog in Orobase" and in the meantime, if you mix 1 cup of Bicarbinate of Soda and rinse your mouth with it and also bath in it that will help both ends! This is a private site, so no-one needs to be embarrassed about talking about these things. Also, if you are on Facebook, look for the Behcets Facebook page, it's a private group and even though it comes up on the Newsfeed, no-one can see it, because it's private, on there you will find us all. We've all been through terrible things with BD, some better than others, but we all gripe to each other and rant and rave and it helps!

    We are here for you and will give you advice and hugs and prayers, so join us if you can.

    Hugs and prayers, Lyn

  • Hi Lyn,

    Thank you so much for your reply and advice. How do I get in touch with Zoe Lovett? I'm going back to the GP tomo see where I get.

    It's great to hear you have been in remission, that feels me with some hope.

    Kezzle :)

  • Hello Kezzle.

    I have been a patient at Addenbrookes Clinic 12 under the care of the wonderful Dr David Jayne for many years now. He is at the top of the tree when it comes to diagnosing and arranging treatment for Behcet's disease, as well as all the other 'Vascular' diseases.

    Do not worry about your appointment. They are the kindest team you could imagine.

    If you do have BD, you will get the very best care, and if you have any worries, the sainted specialist nurse is only too happy to answer any questions.

    So, don't be too afraid. You will be in the hands of experts. You may have to go through a few different treatments before the right one is found. The university/medical research is at the cutting edge, and you will get the best service there is.

    Very best wishes, Suzanne. x

  • Hi Suzanne,

    Thank you so much for your reply. Do you still attend the clinic at Addenbrookes? I was given an appointment in December which I can't make as I'm on holiday so now hoping for an appointment in January it just seems so long away. I can't wait to get some help at the clinic.

    Hope your well, Kezzle x

  • Hi Kezzie,

    I have an appointment on 9th December. It will be 8 weeks since I have been seen, which is quite a record for me because I usually go every 4 weeks, so I must be getting better!

    It is a pity you cannot get an appointment before the new year. The sooner they see you, the sooner you can get appropriate help. Never mind. They say better late than never.

    is your GP getting on with your treatment? The Behcets Syndrome Society have a whole load of down loadable information for GPs. It might be worth while getting this information to give to you doctor. It is hardly surprising that they don't know much about the disease because it is so rare.

    Addenbrookes, in my opinion, is just as good, or even better than the centres of excellence. Because it is part of the University of Cambridge Medical/Surgical/ and every other 'cal' departments, you will get cutting edge treatments as most of the drugs we are given are from pharmaceutical companies which have research going on in the university. I am sure you have heard in the news recently about Cambridge being the pharma/bio capital of the world. For instance, there is an enormous new facility for the Medical Research Council which was built on the profits from a drug you may be offered called 'Humira'. As you approach the Addenbrookes site, you will notice that it says 'You are entering the Cambridge University and Addenbrookes Biomedical Campus'.

    I can promise you that you will be in safe hands. The specialist sister, Stella Burns, probably knows as much as most specialist doctors about our problems!

    All the best,

    Suzanne

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