It's good news in a way. About two years ago my wife started getting mouth, genital and other ulcers,amonst other symptoms.18 months ago she was referred to Professor Moots at Aintree Hospital where a Centre of Excellence was being set up.Well, our experience is it being a centre of slowness.Months waiting for an appointment,travelling from Manchester to Aintree to see just Moots. Months waiting for the next appointment, see Moots and one specialist.Months'till the next appointment,have it cancelled a week before,wait again etc etc.Eventually to e told we don't think it's Behcets,can't help you,go back to your Rheumatologist.I'm upset that it took so long to say it's not Behcets, my wife continues to suffer, our hopes have been dashed and we're as helpless as we were two years ago.
One of the worst things in life is seeing a loved one living in pain and suffering, feeling helpless, and no-one knows what it is or how to stop it.
Doubtless some people have had a better experience at Aintree, but our experience was not a good one.
Thanks for listening, folks.
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peteleblanc
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Sorry for your wife's & your experience of a system that moves so slowly. I can totally relate as I too have been sick for over 16 yrs without proper answers, My Rheumatologist after many years, almost came close to diagnosing Behcet's...then left things up in the air. Both this Rheumy & my Immunologist have finished seeing me.
I'm now seeing a Mitochondrial Professor of Neurogenetics. Her workup is taking months. Some of her tests have made me more sick...gastric & colonic motility radioactive scans.
Immuno thinks I DO have a connective tissue disorder but which one?
Rheumy thinks I have Psoriatic arthritis, but does not rule out Lupus or Behcet's.
What do I think? I think I have Ehlers-Danlos Syndrome plus ?SAPHO or ?Behcet's...
(but then there are other labels like undifferentiated spondyloarthropathy, enteropathic arthritis, reactive arthritis, hypersensitivity arthritis...)
Obviously it is upsetting to have a negative experience with a clinic but I think it only fair to point out that the centers are new (they only really got up and running in July last year) and the NHS takes time to change existing systems. The team at Aintree is now up to speed and one appointment to see three or four consultants must be better than four separate appointments sometimes at different hospitals. Behcets is a rare auto immune disease that is difficult to diagnose and patients suffer from incorrect diagnosis from GP to specialist, symptoms come and go and sometimes do not reflect the underlying cause, so the period of diagnosis can be many months. However one of the functions of the new clinics was to ensure that patient receive a correct diagnosis and are then redirected to the correct area if Behcets isn't the cause. I hope the redirection was not as blunt as you imply and that your future diagnosis will enable you to get the correct treatment as soon as possible
I've have been and seen Professer Moots what a lovely man very thorough and excellent at his work, His team are also brilliant yes you have to wait months to see him and his team but they do give you a excellent service and unfortunately months to your next appointment but they do try and give you peace of mind and hopefully a diagnosis which in the end is worth the wait keep up the good work I say x
The message from ausbehcets has now made me worry even more. I am awaiting an appointment to see dr moots and the only thing that is keeping me going is the fact that i will get some relief and new treatment. I was referred from manchester 2 weeks ago and was hoping for an appointment relatively soon. I have 4 children 2 teens and two babies and i am not able to be their mummy because of this Bd?? I hope they dont tell me its not behcets as it took so long for the diagnosis in the first place i cant afford to waste more years of my life i need to ne a mummy now. Ihope it doesnt take as long for me i am desperate and living on the edge right now. Can someone message to give a positive review on seeing Dr Moots?? I just want to get well enough to have some memories of sprmding happy times with my family.
Oh Gosh ! I am so sorry to hear that people have gone to the centre in Aintee and not been happy with the people they saw there. It is very frustrating for anyone who cannot get a firm diagnosis and my very best wishes go to you and hope you find the answer to your porblems really soon.
With regard to seeing Prof Moots, I can only have good things to say about him. He has been my consultant Rhuematologist for well over 10 years now and was the professional physician who actually gave me my firm diagnosis of Behcets after a long series of tests.
I am so confident in his abilities that when I have been thinking of moving house, I will ensure that it remains within the catchment area of his clinic as I would hate to go anywhere else because he always treats me so well.
I cannot explain why the appointments take so long and are so far apart I'm afraid but I can tell you that even before he was the head of the Aintree C of E, he was the head of rheumatoogy at Aintree anyway and has an excellent reputation both professionally and also with his staff who wouldn't hear a bad word said about him with regard to how he treats them as colleagues in the clinic environment. I have waited to see him for well over an hour after my appointment was due simply because he is dealing with a patient who requires more of his time than the statutory amount allowed for an appointment time. He never leaves his clinic until all his patients are happy and seen regardless of the extra time the clinic may extend to at the end of the day and his staff support him every inch of the way without question in this very dedicated approach.
I can remember him telling me very clearly when I went to see him for a potential diagnosis that he was very concious of anyone being labled with a condition that turned out not to be the case in the end result and so he is very thorough in deciding if the patient is BD positive or not.
The one thing I can absoloutely guarantee that you will get when you meet Prof Moots is a beaming smile and a feeling of being very welcome and relaxed which will immediately put you at your ease.
This is of course, just my personal oppinion of the man but one which I am more than happy to share with anyone who asks me.
I can only say good things about aintree and the prof, am sorry you had a bad experience but this new centre does away with having to travel to different hospitals to see different consultants, you are seen by all the consultants on the same day, I can not praise Prof Moots and his staff highly enough, he does not rush the appointment , he listens, advises, deals with any issues that are worrying you, and is so approachable you sometimes forget your dealing with an expert of high standing, he may leave you waiting a while longer but that is usually because he is seeing someone who needs more time, he has been in the clinic until late making sure all his patients get to see him, i so hope you get sorted, x
I waited ages to see Prof Moots and travelled a long way to see him. I also had everything hinged on seeing him. My first appointment ended up being with the Registrar and after answering all the questions was told to have blood tests and knee X-rays done. A new appointment was made which was months later. The letter sent out to me and my GP summing up the appoint I attended had some incorrect information in it so he hadn't listened properly. Then they cancelled my next appoint and moved it 6 more months away so I had to phone and try and get a sooner one. When I did eventually get to see Prof Moots I was told that the clinic had run late and they needed to finish quickly so the next clinic could start that he'd read my notes and as I had no scars from the ulcers in my mouth it wasn't Behcets! I travelled about 90 miles and didn't even get 10 minutes of his time! I didn't get asked any questions or even get chance to say anything. I burst in to tears. I was devastated!
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Centre of Ecellence
How common are 'ulcers that are not exactly ulcers'?
Australian sufferer
