I was diagnosed 5 years ago with BD after 21 years of being ill with oral and genital ulcers, painful joints etc... I moved to scotland 18 months ago and my meds stopped working and was referred to a new consultant who didn't have a clue about BD and never sent for my file in England was going to take me off my meds all together and leave me with nothing!! I refused to go back to him! And was sent to a vascular consultant who seemed to understand my plight and know about BD! I felt constant when I left the room he was going to bring me in for testing to be able to take a drug! Said look at it as a MOT!!!!!! Then 2 months later I receive a letter saying he wants to re test me for his own piece of mind!! And he also has not sent for my file from my old consultant! He wants me to have bi opseys on my ulcers and be tested all over again but has not referred me to anyone!! It's like one step forward and two back!! I was suppose to have an appointment with prof fortune which has never come about and I am now so stressed am having a flare up which I have been on steroids for and back on colchicine which isn't doing anything!! Rant over and thanks for listening but would be good if anyone had any ideas????? Thanks D x
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don5766
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Hi sorry for your problems but in some ways it is part of the illness when we know more than the docs and they don't like it!!!!!
I was hospitalised in Spain a few years back with a really bad flare of BD my husband rang my Rheumy and they sent all my files within a few days. We had to pay something like £40 , I think but it was well worth it and I was soon sorted. Just an idea for you to do the same better than waiting forever.
Thanks for your reply! I rang my old consultants secretary re my files who said that the new one just needed to request them!! This is what I can't understand why they haven't!! Every time I go to app I ask them why they haven't and get no response!! I am going to get back in touch with my mp again as they seem to be told more than me!! What ever happened to confidentiality lol!! X
I check in on here most days and feel I don't suffer as much as many of you guys! But when I have a flare it lasts like forever!! I suffer terribly from mouth and genital ulcers! And because I don't have the eye problems the consultant is doubting my old consultants diagnosis! I had several ops on the genital ulcers before the diagnosis as at that time no one knew what they were! Even sent off to clinic for diseases which was very degrading and don't wNt to be back in that position again!! That's why so am asking if anyone else has been in same position and what they did or have any advice x
That's really disheartening that they don't even want to try and get hold of your old records! One thing I have gotten a copy of is a biopsy from a genital ulcer (and have made multiple copies of) which is definitely one of the big diagnostic things used for me as I don't have eye symptoms either. I never want to go through having a biopsy again so you have my sympathies, but if you can, get a copy of any of the tests that indicate BD - the biopsy results, any negative tests for bacteria/virus/fungal things (eg and especially herpes..), the genetic results if positive, and also take a photographic record for when your symptoms aren't showing as significantly.
With getting the request, if s/he's really not being proactive about it at all, ask them to write up the letter there and then, it should only take a minute or two. Then you can organise to get it faxed to your clinic. Or maybe write a letter yourself, from your point of view asking for a copy of everything then have something down the bottom that your Dr can sign to say that they are your current treating Dr and would like to receive your results.
Something like..
Dear Dr PastDr,
I would like to request that all my records and results pertaining to my diagnosis of Behceht's Disease be forwarded onto my current doctor _______. (Or, yourself). I consent to the release of any personal information relating to this diagnosis.
Signed: Date:
I, Dr CurrentDr am currently treating yourname and request the documents mentioned above relating to her potential diagnosis of BD.
Signed: Date:
Not that I've ever done any of this, but I work in allied health and sometimes the easiest way to get things done is to do all the work for the Dr's and just needing them to sign something.
Also, don't worry about the level of suffering you experience vs other sufferers. The disease itself is debilitating in many ways, not just pain, vision loss etcetc but also in the way you have to live day to day, not knowing beforehand if it's going to be a good day or a bad day, if you're going to wake up feeling healthy or wake up with a flare. It's not easy, no matter what degree of symptoms
The best thing you can do is contact the last hospital where your old medical file is and request a copy of the whole file. It may cost you some money but at the end of the day you will have a full copy for yourself and be able to take a copy and hand them to your new consultant.
After every consultation make sure that you request a copy of every report and that way you can build up your own file for you to use for any consultant you go to.
Thank you all for the helpful advice!! Jozi everytime I got a flare of genital ulcers I was asked to ring hospital to get that same day app so they cud see the ulcers at their best as they said but this never happened! They wud take me down to theatre and remove them and this happened several times but I was never told if a biopsy was taken!! How did ur biopsy come about!! I will request my file tomorrow so fingers crossed x
I was referred to see a dermatologist after my GP finally agreed that my genital ulcers were not as a result of herpes. The derm took a biopsy straight away, using a local anaesthetic.
Hi, all you need to do is request a copy of your medical records. It will cost you about £50 and will need permission from those who have put data into your records. In addition you should send a complaint to the governance dept of the hospital as you are not being treated in accordance with guidance
MOT -Well, first off I would write a letter of complaint to the Practice Manager! What terrible treatment you've had!! I would be in that surgery performing like hell about all this. Its no good just accepting what they tell you, it's your body!! IF you go back to this Dr who seemed to know about BD, tell him you refuse the biopsy's and ask him to send you to a Rheumatologist for a GENETIC test and they will soon find that you have the GENE HBLA-15, which proves you have BD. Getting this Genetic test is very important and it usually makes them sit up and take notice! Ask him to prescribe Kenalog in Orobase, this will soothe your genital and mouth ulcers. Also bath in Bicarbinate of Soda. 1 cup to half a bath full of water. You can also pour a jug of this over your ulcers after going to the loo if you are burning. Bicarb also soothes mouth ulcers, just hold it in your mouth for a while and spit out, Steroid injections work better than oral. I am not surprised you are ranting, but you are ranting at the wrong people, go back or phone and make a big fuss. You can't afford to wait and see what happens!! I'm so sorry for you. I remember the hell I went through with those ulcers and how sore they are. I will pray for you MOT!!
The gene (HLA B51) is present in people without Behcet's and it is also not present in people with Behcet's, it doesn't 'prove' either way, unfortunately, it's just another in the list of indicators that make it highly probable, but there's no gaurentee.. Definitely worth getting but I would still get the biopsy, while you've got the ulcers. The more things you have to indicate you have it, the harder it will be for any new doctors to deny
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