To cut a long story short, been under a rheumatologist since last September. Symptoms are joint pain, mouth and genital ulcers and horrendous fatigue. Tests for everything have come back negative, so rheumy has said ctd, suspected Behçet's.
The problem I have is my gp won't treat me or give me anything other than painkillers. Every time I go all I am told is that I'm under a rheumatologist and it's not their place to diagnose me!
Asked them to refer me to a c of e and his response was, if it is Behçet's, it could be something else. This was after he told me that in his 30+ years of practising he'd never come across it!
Sorry this post is so long, but I'm at my wits end, constantly off sick in a lot of pain and getting nowhere.
Any advice is greatly appreciated.
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Aimi40
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If you are under a Rheumatologist it's their job to devise a plan of treatment not your GP's. Many of the medications used to treat Behcets can only be prescribed by Consultants. If your Rheumy can't make the diagnosis then it's up to them to talk to or refer you to someone who can.
The C of E's are nationally funded and donmt cost anything for a referral. Ask for the reasons for the refusal to refer you in writing and get them to document your request and their refusal in your notes and then make an official complaint to your GP surgery. That often brings results.
Can understand your frustration as my GP practice consists of 19 GPs and none of them have heard of Bechets before either and when I go to them when I'm having a bad flare up they tell me to contact my specialist nurse under my Rheumatologist not only that but since been diagnosed with Bechets every time I have been unwell with something else they now always say it is my Bechets causing it because they just doint understand but see your Rheumatologist he can refer you to one of the Centre of Excellence and they deal with everything x
You do not need a confirmed diagnosis to be referred to a Centre of Excellence. Before the CoEs, the average diagnosis took 7 years. One of their aims has been to reduce that time. They provide a very good diagnostic service, supported by a range of consultants with expertise in Behçet's. The centres are nationally funded, so there is no cost to the practitioner making the referral. You can be referred by any medical professional who suspects you may have BD, including a dentist who has seen your ulcers or an opthalmologist concerned about your eyes.
Find another GP is my first response. Yes you have BD, exactly same symptoms as me. You need to get diagnosed and on meds - and I don't wish to frighten you - but I had monthly migraines for nearly 15 years before I was finally diagnosed, and that was only because I got inflammation in one eye. I only have 30% vison in it now. Inflammation moved to the other eye, but was put on Azathioprine, and thankfully it worked. Continually monitored at hospital. Still get floaters, but it is checked regularly. C of E in Birmingham and London. My hospital is Derby and they have been incredible. Good luck and let us know how you get on.
Relatively recently diagnosed, although managed for 40 years, and can sympathise with your dilemma fully, having all the same symptoms as you, I was diagnosed last year by rheumatologist after having goodness knows how many tests and x-rays and MRI's to find out where my pain and fatigue etc was coming from so it was March 2016 when I was told I have Joint Hypermobility Syndrome (JHS), I knew I was hypermobile in many joints and had hardly ever been an issue over the years and never knew such a condition existed let alone could make me feel so bad, just told to take it easy and take pain relief, asked about the ulcers in both areas and just told had no idea not associated with JHS... anyway after several months my joints started to feel better with lots of self treatment and my fatigue appeared much reduced although tired easily, but still no answer to the ulcers... I read and read so much to help me understand the condition. I had been to an oral and maxillofascial consultant, been to the dentistry hospital and had my tonsils removed aged 52 all late 2014, still nobody could give me an answer to the ulcers, I'd really truly hoped that decades of tonsil issues having them eventually removed would solve the problem, sadly not the ulcers continue.
Decided to do some research as I had not looked before at both mouth and genital ulcer together and when I found the websites about BD I was alarmed as I was reading about me! I booked an appointment with the GP who said I could not have Behcet's because I don't have eye problems, I asked how she knew... I don't as far as I know but this was not the point, I had recently had both sets of ulcers, which incidentally I appear to in the main be able to self manage to a point, but had needed to go to the GP for anitibiotics when they persisted, the GP told me it could be down to lots of things, when I asked what she was unable to give me an answer! she asked me if I wished to be referred for investigations for BD and I said yes... 5 months later I get to see a different rheumatologist who knows lots about BD and was able to discuss this with me at length, I was advised by her I do have BD although she says I appear to have self managed this condition for tens of years but it appears the condition is getting worse, especially the ulcers and joint pain, we also discussed the JHS diagnosed 12 months earlier, since this also effects the joints, so now not only do I have BD I was also told I have another new condition Ehlers Danlos type 3 (EDS) which appears to run along side JHS in many patients which I had already read about previously. Now I'm left wondering whether the joint pain is through BD or JHS, I suspect its the BD as it flares up rather than being with me all the time, as do the ulcers, although at the moment everything is spiralling so who knows.
As far as you are concerned I would first of all, if you have not already, get a copy of the letter sent to your GP, once you know exactly what has been written then write back to the Rheumatologist directly and explain the dilemma you are in and could he/she please intervene with the GP to advise on a course of medication. Please never leave a consultant without asking for a copy of any correspondence they send to your GP, and you should always before leaving ask the consultant what there diagnosis is and how this will be treated going forward, please keep records it is vitally important, make notes when you leave a consultant and if you need to jot things down whilst you are there make a point of doing this, much more is normally discussed than in a report sent to your GP, take pictures and log your condition, my Rheumotologist was interested in the number of ulcers I had over the previous 6 months, kept a copy of my log and has asked me to continue to log everything at the same time as putting me on a trial of Colchicine for 4 months with a follow up in 4 months too and sending me to Genetics.
Look at anything that can help with your joint pain, I use lots of Aloe Vera whenever I have flares and this helps with the swelling around my ankles, elbow, knees, elbow hips, shoulders etc, I also take homeopathic remedies and use homeopathic creams too and just about the trial comfrey cream/oil, I soak my feet and ankles in epsom salts and take baths with the same in, I am not able to take anti inflammatory drugs due to JHS and EDS in gatric and oesophagis, I was offered amitriptyline again last year when diagnosed with JHS but I was on this for 9 years and it masked lots of my issues and I blame this drug for me not knowing what I was really doing with my joints as it was when I came off this drug in 2014, due to unexplained joint pains, everything started to materialise with my joints much more and eventually correct diagnosis rather than nerve pain in my right leg..., it was a horrendous drug to come off which took me around 4 months and I'm not going back on it if I can help it. Don't forget to move as much as you might not feel like it this is very important to keep your joints moving. Good luck and let us know how you get on.
Talking to the gp is like pulling teeth! I only knew about the Behçet's when I went in March in relation to a 3inch lump that's appeared on my shoulder. The doctor mentioned it in passing!
So asked for a copy of the letter and sat with the gp whilst we went through it. Hypermobile, low vit d, suspected Behçet's.
On the back of all your comments (you've all made me feel that I'm not insane nor a hypercondriac)! I phoned my rheumy and left a message explaining the situation.
You know you're stressed about it, when you're worrying about Behçet's and not a 3inch lump!
Hi again, so you're Joint Hypermobile Syndrome (JHS) too you need to know from your rheumatologist if you have Ehlers Danlos type 3 as well, and what have you been advised you should be doing about the Hypermobility, the issues again arise is GP's and other specialist simply look at this as having a mobile joints but when its complex its got a whole host of other issues too, have a look at the JHS website for the UK hypermobility.org/ and the EDS ehlers-danlos.org/about-eds... you might find some of this very useful because trying to decide what falls in BD, JHS and EDS can be quite hard and nobody appears to want to explain... So has your shoulder popped out? Gillian
The letter the rheumy sent just says hypermobile and she referred me to occ health, physio and bio mechanics, they've helped a bit.
Read the link you sent and I have to say I can tick a lot of the boxes.
The gp has said there's nothing they can do until I see the rheumatologist in September, and have told me to take amitryptiline as it will help with my mood as well as the pain.
When I discussed amitriptyline with the rheumatologist who has recently diagnosed the BD she agreed this drug had masked a lot of my JHS pain and how I would have been moving for 9 years, only one other GP has agreed with this so I was pleased to hear the consultant agree too. I would just say to take this drug with caution it will make you feel possibly better, I thought it was wonderful once I had got over trying to lift my head off the pillow in a morning, would advise to take it around 8pm if you want to get up at a reasonable time it usually given as an anti depressant in larger doses and nerve pain in lesser doses, I was on a very small dose only building up to 35mg a day it took me 6 months to come off it and recover from the side affects and when I saw the neurologist last year he told me I should of only been taking this drug as and when required when I had nerve pain and certainly not continuously. If I can help in any way just give me a shout. Good luck with the pain and your mobility x
You have no idea how much you're helping, I feel like printing off your replies and showing everyone I know!
I am only taking the amitryptiline to please others, I was given it and codeine last year. But as they didn't really do anything but leave me feeling spaced out, I didn't really take them. But because I'm still in pain and gp has told me to take them, my partner and family are insistent! I take 10mg a day and have started doing Pilates to help with joint movement.
I think I'm completely misaligned thanks to the hypermobility, my ankles and knees are a mess!
Hopefully, in a few weeks I should notice a difference!
Hi again, you should try taking the medication as and when you feel you need it. I expect you have already but just in case make sure you advise your pilates teacher about your hypermobility so he/she can watch you do not over extend it is very easily done, like you my knees and ankles are not good, I would also recommend doing ankle exercises with bands they are gentle small controlled exercises that will help you build muscles around your joints and you will need to do other exercises with your knees, you may not be strong enough in these areas to manage pilates I know I was not until I increased the muscles in my ankles and knees, I have had to stop pilates recently because it was causing an issue with the top of my pelvis, I kept wanting to lean backwards when doing the side exercises (tilted pelvis) and in the end my chiropractor said I had created that much inflammation in the right pelvis area around the deep muscles that should try and rest this area... its a pest really as I enjoyed this when I first started. I have also only recently started swimming, again on hold because of the above.
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it usually given as an anti depressant in larger doses and nerve pain in lesser doses, I was on a very small dose only building up to 35mg a day it took me 6 months to come off it and recover from the side affects and when I saw the neurologist last year he told me I should of only been taking this drug as and when required when I had nerve pain and certainly not continuously. If I can help in any way just give me a shout. Good luck with the pain and your mobility x
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