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Behçet's UK
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Searching for a diagnosis. Please advise

Hey everyone, thanks for taking time to read my post!

The past couple of months I have been on a bit of a journey to say the least. After hearing all of your stories on the struggle to get a diagnosis for this horrible thing I am sure that is something you will all relate to.

I by accident stumbled across Behcets whilst frantically searching my symptoms.

I’m not sure if I fit the criteria so i’d Love to know more on how your symptoms displayed themselves and wether mine sound likely to be linked to Behcets.

Firstly my body has recently been covered with acneiform lesions. They are painless but sometimes very itchy. I have them dotted across my chest, upper arms, back, stomach and bum.

The second symptom that came up at the same time is what my doctor has diagnosed as genital thrush. It’s not painful, just a bit itchy. Are the genital ulcers related to BD generally considered to be painful? And could they be mistaken for thrush?

I do get mouth ulcers occasionally when I am run down but not to a severe extent. I’m not sure if that is not worthy though?

I also suffer from IBS. Although that’s not mentioned on the NHS website as a symptom I have seen some people mention it on here.

Any advice will be very well received :)

All the best to you all

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Oh one more question, sorry -

Do your symptoms tend to all come at once with flare ups or can you show just one or two symptoms at a time? The world of BD is all very new to me right now

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Hi Lugaluga

sorry to hear you may be starting on this or any path.

have you been referred to a dermatologist, or done a good search of the different types of skin problems yourself, see if you can find yours. There are a couple of skin conditions that are itchy one is prurigo nodularis which is a disease in its own right and also lichen planus that can affect bits & bobs, mouth, skin etc. See if you can find yours then at least you have a starting place. Mine don't itch, more a combi of sharp stab pain, burn feeling, bruised feeling or numbness but I am not diagnosed yet. I go to a Behcet's C of E next week.

About 30 odd years ago mine was skin and mouth ulcers pretty much in waves, like flares along with joints, knees mainly. Then the flares became closer together and the IBS was diagnosed and that joined the flares. And so on. As time moves on different problems and areas join in the party, all have their own flare parties and join in for get-to-gethers on an increasingly regular basis. Its at this point sensible people should have insisted on help. ;)

It's good you are starting now, don't be put off. Others will offer advise too, make sure you get all your results from all your tests, have all your documents, anything medical you have had, any history indicating ulcers skin and mouth, unusual rashes or problems. Keep it all in a file and start a journal.

Try and get steroid/antibiotic cream for the skin to try out from your doc, or at least anti histamine to stop the itch and slow the scarring down :) Ice also helps with pain and itch ;)

Good luck and don't scratch ;)

Yvonne :) x

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Hi. I find that I have many symptoms but have most of them under control now without medication. I would take pictures of your lesions as these will come and go and you might not have them when you see someone. My genital ulcers are horrendous when active so to speak. When they first appeared they were very concave and about 1/2 in length. I have 5 scars which will never go. Once a year they may get inflamed and I use Trimovate cream which is a steroid cream which settles them down. If I have problems with ulcers on my skin the Trimovate is an all rounder which you can use. Ask your doctor may help you. I also suffer from IBS but have learnt that certain things I don’t get on with so I avoid. Coffee, chocolate, nuts and many more too long to list. What I do is never have the same food twice in a row as this builds up very quickly and causes problems big time then this can cause my other problems i.e skin to get worse, fatigue, eyes, joints etc Always keep a record of what you eat any reactions, a nuisance but worth it. Also some doctors don’t know a lot about BD and can be dismissive. You may need to stand firm. All the best I hope things go well for you. Xx

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Hi i have been diagnosed a month ago. I had all the symptoms you are referring too. I had non stop mouth ulcers, and occasionally viginal. For me moth ulcers was the worst part, usually 4+ in 1 go, stopping me talking and eating. I have quite a few incidents of struggling to cope with my body's tempeture. Most of the time my skin and blood feels like is boiling or that I have a fever. I am trying to get used to this diagnosis at the moment. Having my next appointment on monday, hopefully I get stronger meds as the ones I am on now don't seem to do much

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Hi. I find my body temperature goes from cold to boiling in seconds as well. Very difficult to get used to nobody seems to know how to deal with it. Let us know how you get on Monday xx

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My symptoms vary each time I’m in a flare. For example, mouth and anal ulcers with Reynauds and livedo reticularis at once, and then eye symptoms like blurry vision in one eye with floaters and migraine with aura and extreme fatigue like I got hit by a truck and super fast heart rate all together. So it varies for me.

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Mine started in teens and have come in waves until a couple of years ago. Then it became a constant. Three months into that flare I developed Hemiplegic migraines and migraine with brainstem aura. They go hand in hand with Behcet’s. My skin lesions are like you described but they become craters when done and then scar over. I get huge lesions on my scalp. I’ve switched to all natural cleansing products and that’s helpful for their pain. I used to have red nodules like blisters filled with blood that were super painful but I don’t see those much anymore. Eye pain and joint pain, temperature issues and EXHAUSTION seem to be my standbys. I have fibromyalgia as well. It’s hard to distinguish sometimes between the conditions. So far no medication has been effective. But we’re still trying to find one....hope your journey with this isn’t too eventful!

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