Explaining to your GP what Behcet's is ???, Please Help.

[OorWullie]

Hello Everyone, I have been a member for over 5 years but quietly in the background. I would just like for someone to help me by giving me advice on the best way to communicate with the professionals as I feel like I am not being listened too. My Dermatologist has confirmed that I have Behcet's but my GP does not know what it is, he is also male so I need to try and explain to him what it is and how it affects me. Can someone from this very large family help me with a summary of what to say ? I appreciate your help and thank you so much, I just don't want to sound patronising. Thank you.(I have all of the usual symptoms and I am in constant pain, I have the mouth ulcers, genital ulcers, skin lesions, bowel problems, fibromyalgia, depression, self catheterize + other health issues)

[Scottishterrier]

do what I have done get as much information off your illness and if you are in Scotland go to your MSP or if in England you local councillor and see if they would take your case on and explain what you would like them to do by getting GPS educated in Behcet's

good luck

Stevengeorge

[gillianTS]

Hi OorWullie

When I was struggling to discover what was going on in my life in 2016 after a lifetime of living with things I never even knew I had. I started a journey to find out what had happened to my lovely body I had so many things looked into being sent here and there to one specialist and then another, cameras everywhere, MRI, scans, xrays, blood tests etc etc and eventually ended up at Rheumatology who initially diagnosed Elhers Danlos (EDS) but could not account for the ulcers was told they have nothing to do with EDS or rheumatology see the dentist, I have... I was given no medication and told to manage myself and rest every 20 minutes! So I continued to live with all these other things for a while and researched and researched and fell upon Behcets it was like a light bulb moment for me everything slotted in to place but my next issues was my GP who had previously diagnosed me with fibromyalgia and felt insulted when I questioned her about whether she was 100% I had fibromyalgia or did she think I 'might' have fibromyalgia... anyway I requested an appointment with a specialist and that turned out to be rheumatology (who by the way completely discounted fibromyalgia theory and diagnosed EDS instead as well as other bits and pieces unrelated to Behcet's this was in 2016), so back to the problem of now saying to the GP in 2017 I think I have Behcets! so before I went I did more and more reading and printed off short bits and pieces about the condition on one page and asked her to read it, she did and discounted it because immediately saying I did not have eye issues... so I asked her why the oral and genital ulcers? well it could be lots of things she said, such as I asked, she struggled, undeterred I said she needed to refer me and that is what she did, I attended my appointment months later and was literally there explaining myself again like so many times before and showing pictures of ulcers and lists of ulcers times and dates etc as well as the list of tests and scans etc and the new Rheumatologist stopped me and said it's Behcets, now I did not want Behcets or EDS or anything else for that matter but I was happy to have an answer and happy to have a plan, happy to have more tests and happy to try and find a suitable drug to help me, now I think my Behcets is mild in comparison to so so many people on here but I do feel things have got worse since my first symptoms nearly 40 years ago and having self managed myself I feel has worked but not anymore, I think you need to ask for help with a referral to a rheumatologist or whoever it is other than the Dermatologist who deals with Behcets in your area, do not be deterred into ringing hospitals yourself and asking Rheumatology and trying to establish which consultant deals with Behcets even if you need to be referred out of the county you live in.

Good luck with moving forward and getting help you honestly will not sound patronising they have to learn about your condition, my GP's are now so much more on board with my conditions and every time I go back with something I feel happy they are talking to me more openly and even telling me I know far more than they do and wishing to learn.

Take Care, Gillian

[Jaxxi in reply to gillianTS]

Gillian, my story is v similar to yours. 40 tears with no diagnosis, then "CFS/ME" and "IBS" for 15 years until I stumbled across Behcets. I went to GP with printouts and info about the Behcets Centres of Excellence. He was happy to refer me once he was assured his practice would not have to pay.

[Hidden]

Hi OorWullie,

I suspect the issue here is that you are being treated by a Dermatologist who aren't the best choice to manage a systemic disease. Behcets is a rare, complex disease that needs to be managed by a Consultant with experience in it. It's up to the Consultant to manage it and prescribe appropriate medication and to liaise with your GP.

What treatment have you been given?

[Zuzu798]

OorWullie Goodday to you, I am so sorry that your GP is not understanding what you are going through. My best advice would be that your Dermatologist needs to write to your GP with an explanation using their (Medical Terms) another suggestion would be is to say to your GP you have something very similar to Lupus but with variation. GP's all seem to know about Lupus and have certain knowledge about it. and then explain that Bechet is also an Auto Immune disease as are many other auto immune diseases. Just as you get many tropical diseases the Auto Immune diseases lists are endless.

[Dan_NY]

Get a new GP. When you see the new one, bring printouts, symptom list, possible treatments, maybe medical papers. This way you are coming into the doctor with a diagnosis rather than having someone try and diagnose you. The question then becomes "How to treat" instead of "What do I have". If a new GP does not work, keep looking until you find one who wants to pay attention and learn about this condition. good luck.

[sian35]

Hi. Do you live in England? If so ask your gp for a referral to one of the centres of excellence. They are good at supporting you, suggesting meds and reasonably good at liaising with gps. GPS do pay attention to specialist centres and it makes me more confident when I see Drs locally. Kind regards, sian

[Jaxxi]

Hmmm, if your GP has never heard of it then perhaps he/she could spend 15 minutes reading up on it? Just a thought..

[GloomyEeyore]

I have not yet got a confirmed diagnosis but my new rheumy is fairly certain I have Behcet’s. When my old rheumy first mentioned it I looked it up and ordered the booklet from Arthritis Research arthritisresearchuk.org/art...

I took it to my next appointment with my 🌟 GP. Fortunately he had heard of Behcet’s and was very knowledgeable. Kept the booklet though to let his colleagues, both doctors and nurses, read.

[Sunset]

Bir bardak suya bir çorba kaşığı su koyup kaynatın. Soğutulduğunda, ağız yaralarının çabucak iyileştiğini göreceksiniz.

[Hidden]

Hi, I had a flare up and went to the eye hospital ( eye vasculisis) and went through eliminating various conditions. It took a few months . In the end they were suggesting it might have been a virus , but because a junior doctor that was my first point of contact mention behcet in a conversation ... I checked it and ask the specialists whether this could be the case . The specialist then said to ask my doctor to refer me. That bit I didn’t get, but I went to see my doctor and explained and the behcet clinic in London accepted the recommendation. I have followed by them since then . They are amazing. In the same way and earlier on , I ask my doctor to refer me to an EDS specialist , I too am hypermobile and passed the test but she did say it wasn’t EDS that was causing my initial flare up. Being hypermobile means my body get stress easily and be prone to some forms of inflammation , that in my case I believe agrevate my behcet ... so trying to find the right balance between the 2. But the bottom line , is to take things in hand by asking your GP to refer you, as the previous answers recommended.

[Frustrated2 in reply to Hidden]

Hi I have received a “soft diagnosis “ of possibly having behcet’s. I have suffered many years of what we thought was reoccurring shingles. Sometimes they break out and sometimes are internal. I have had them stomach/flank area twice,

Mouth/throat area several times.

Right side of head and ear.

Most recent episode was above my left eyebrow and tip of nose This has left me with neuropathy pain . I get zaps and zingers (like electric shocks through my eye/cheekbones and face)

My vision is blurry and light sensitive along with it feels like I’m seeing objects through a split screen. A Retina specialist has given the soft diagnosis as the blood flow is slower in that eye. During this breakout I also felt them internally breaking out through cheekbone area. Also down my throat and internally in my chest area. I also had a cluster on the roof of my mouth close to a tooth. It’s been a total of 10 breakouts in 28 years but I can go years in between them.

Yesterday I was having burning pens and needles feeling in my scalp area. My head felt nervey and very heavy. We did stumble upon a few red bumps that look like a inflamed hair follicle.

Does this happen with Behcet’s?

I don’t see this Retina specialist for another 3 weeks, the eye pain is terrible. She’s had me go Purchase new polarized amber tinted eye glasses to wear indoors to see if that helps, so I can go back to work while they figure this out.

Any advice or comments would be much appreciated.

[Hidden in reply to Frustrated2]

i Had a eye vein inflammation that was noticed during an eye test at boots , after an eye scan . They ask me to go straight away to the eye emergency hospital . I wasn’t aware that there was such hospital ... this was the beginning of being tested for various stuff and led to behcet . I now always ask for scan of my eye at boots - and the specialist at the eye hospital said to come to the emergency if I have any eye pain. So base on this experience , you might want to check a closeby eye hospital and get yourself checked as you are in pain in that area and your vision is affected. Take good care.

[Frustrated2 in reply to Hidden]

Thank you for responding! 😊

I live in the US and was seen her by a eye doctor and then sent to a Retina specialist. That is who actually is giving me the soft diagnosis, pending review of my chart notes from other doctors I’ve seen in the past, Neurologists, general practice doctors. This Retina specialist found the blood flow through my left eye was slower than my right eye. Along with the dry eye.

My general practitioner has been doing many tests and we are finding things out that may attribute to my immune system issues. I am doing a big detox for toxins found in my system to Canadia (yeast) in my gut and going off sugar, dairy and gluten. Along with adding supplements that I was deficient in and also healing my gut.

When you have flare ups do you have a visible rash/ulcer or do they stay internally?

[UKADMIN Partner Behcet's Syndrome Society]

Hi OorWillie, If you are in the UK and would like us to post or email a copy of our various factsheets on Behcet's let us know? [e-mail]