Is this Behcet's?: Hey there, I was recently... - Behçet's UK

Behçet's UK

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Is this Behcet's?

Benny210
Benny210

Hey there,

I was recently diagnosed with bilateral uveitis (which apparently had been going on for quite a while). At the time the opthamologist I saw asked about other health problems I had. I had been diagnosed 9 years ago chronic migraine with brainstem aura which causes a large number of issues. I have atrial tachycardia, but where he became more interested was when I told him about chronic mouth ulcers (can have up to about 10 at once, 6+ times a year which I use a steroid mouthwash for, nothing else helps), spots / blisters which pop up all over my back and shoulders, real unpleasant, aches and pains all over my body which feels what I imagine arthritis to feel like, random unexplained inflammation in my abdomen (eosophagitis, costochondritis) and currently being tested for Chrohn's which previously was negative and a lot of other things besides. I'm starting to question whether or not the migraine diagnosis is right or if something else (Behcet's) is causing this as suggested by the opthamologist.

I have an appointment to see Rheumatology in a couple of days, but was wondering if anyone else had so many issues, what kind of problems you have, how you treat / deal with the symptoms and what tests were done to go some way toward confirming a Behcet's diagnosis.

Apologies for all the questions, just kind of anxious on the one hand, but also hoping for some answers real soon that would offer some relief after so long with so many problems.

Thanks and hope you're all well,

Ben

5 Replies
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Hello, Benny210!

I’ll start by saying that I am not a doctor and cannot respond to your question as to whether it’s behcet.

I can say though that your story and mine have similarities. I have/had (uncertainty over verb tense is due to my understanding from doctors that the uveitis is still there but under control) bilateral uveitis, multiple and fréquent mouth ans skin lesions, joint and muscle aches, recurring tonsillitis- and eventually pharyngitis after my parents decided on a tonsillectomy for me (that was way back in the 60’s when it was still considered kinda routine), unexplained fatigue and headaches, IBS. I have the occasional premature ventricular contractions - it feels like my heart misses a beat. I have always been hypotensive and had rather frequent vertigo and blackouts.

After many lab tests, doctors narrowed down my possible diagnosis to 2: 1). Behcets; and 2). Undefrentiated connectivity problem. All my medical reports are in French and any mistranslation of the 2nd possibility is my fault.

The doctors eventually came up with a diagnosis of “incomplete Behçet” - because I do not exhibit the 3rd pillar of Behcets - the genital lesions.

Tests done: Those were more than a decade ago, I cannot remember all. The more memorable tests were for: Syphilis, Sjogrens, HIV/AIDS, Bartonella, rheumatism, TB, HLA B51. The tests were through blood analysis, Xrays, ultrasound, brain scan/ MRI - the test for sjogrens included a procedure where they inserted paper strips beneath the lower eyelids to measure tear production. All tests came out negative.

It took approximately 6 months for the doctors to classify my case under behcet. Initial treatment was steroids, because my left eye was almost without sight. Eventually evolved into azathioprine, colchicine and Humira. My current treatments are colchicine, Humira. In the course of diagnosis, they discovered my body’s propensity to blood clots - I regularly take baby aspirin for this; Clexane injections prior to any activity that will require me to be relatively still for four hours or more - a long flight, for example. I also have osteopenia but I guess it’s a different story.

Diagnosis can take time, and waiting can cause anxiety (who needs that in these Covid-19 phase of the human life?). But do try your very best to stay calm - in my experience, stress exacerbates my symptoms. In many instances, stress also triggers my symptoms.

Wishing you all the best

Hi Ben, it does sound Luke classic behcets, if you are in the UK there are three centres of excellence for the conditions, London, Liverpool(?) and Birmingham. It would definitely be worth asking your rheumatologist to refer you to one of them, they do an assessment day where you see an ophthalmologist, rheumatologist, dental expert and the three then discuss their findings, your history and give you a formal diagnosis.

There is a blood test for a genetic behcets factor which i have never tested positive for.

My advice is write your medical history down, think back to every strange occurance (I have relapsing polychondritis so my cartilage in my ears, nose etc will turn bright red and swell, my acne boils were behcets cysts etc) I didn’t realise the significance of symptoms i had suffered over the years until I was diagnosed and looked behcets and RP up.

Good luck on your journey !

Colette

Hey both, thanks so much for your replies and sorry that you've each gone through the mill with this thing.

I am in the UK and currently I've been sent to St. Heliers for examination, but will certainly be asking about the specialist clinic in, London, seems like it could well be a very good place to visit to get something as close to concrete as possible.

As I've been dealing with a whole load of symptoms (only kind of scratched the surface with original post) I'm wondering how effective the medications you take are at controlling your symptoms generally? Do your symptoms get treated individually? Or is there something to target the underlying core problem? I guess immune system. I can imagine if treated individually the number of medications required would be extensive. I'm feeling a little reluctant to take an immunosuppressant unless it's really going to go toward giving me back some quality of life.

It's all very alien to me for now so trying to understand as best I can. In fairness though, while I am anxious about a diagnosis it would be good to eventually get one and hopefully start getting on top of this chaos.

Thanks again and hope you're doing well,

Ben

Hi there,

Im in USA, and how we get diagnosed for BD, is the exclusion of everything else. I tested negative for everything as well.

Behcets can manifest differently for everyone. Some get the uveitis (i dont), most get the ulcers in the mouth and genitals. Some get the meningitis (have had 12+ times). Myself I get the meningitis, erythema nodusom (but on chest) the oral ulcers which if bad enough will be genital. Arthritis in the wrists/ ankles. I used to also have extensive stomach issues as well- addressed below.

Regardless of if it is or not, I will share what I have learned- Inflammation is is inflammation. Inflammation is the hallmark of most autoimmune diseases. You need to control the inflammation.

You cant treat each symptom. You need to treat the body as a whole. You need to realize that this will take time (1-2 years).

Once you're autoimmuny, you're sort of autoimmuny all around. The below helps anyone:

1. Drink only water. Aim for 3-4L a day.

2. Cut all sugars. Even fruit for right now (you can add it back in later). Think Meat/fish, a veggie (no corn) and good fats (Evoo, avocado, coconut). Dont eat things out of a box/bag. Eat things from this Earth. Whole foods (they do not have to be organic).

3. Get all the sleep. Sleep is so critical. Good sleep. Not lay on your couch with the TV on. That means going to work (if you still are) coming home and going to bed if need be. At one point I was sleeping 15 hours a day. My body needed it.

You need to listen to your body.

Most of us have had very good experiences with the diet change. I used to be on about 15 diff meds, just sort of stringing along, and i just wasnt getting better. Turns out I ended up being sucrose intolerant mid way through (but sugar is inflammatory regardless).

But anyways, Im med free and literally living my best life and I chalk it up to the above. If youre on IG you can find me for meal ideas- theyre all sucrosefree. @bitterbiologist

Keep a journal of symptoms, pictures, and most importantly a time line for your doctors. Keep up on research. Print articles if need be to have ready for them.

Dont give up on yourself. There is a light at the end of the tunnel. xoxo

Hi, I dont currently have eye symptoms but have suffered with migraines for years. I’ve had brain MRIs done and venography which didn’t identify any issues. Best advice for migraine is check out the guidance on the national migraine centre website, good hydration, you can try 400mg magnesium citrate or riboflavin from memory (do check). This sometimes works. Other than that try and track down your triggers. Mine was neck pain & was a major contributor sorted by Botox injections. Incredible relief. Just exploring tachycardia issues myself but also take a beta blocker for migraine prevention which has also helped. (Check NICE guidelines for migraine and BASH headache guidelines for treatment pathways). Apart from that I’ve had very bad ulcers, skin lesions and general arthritis. I’m primarily managed by colchicine but I’ve heard some people say that the headaches went on azathioprine. So hopefully that helps & shows you are not alone. Best wishes

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