Behcet's Syndrome Society
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No diagnosis - possible Behcets?

Hi all,

My symptoms starting developing around this time last year. In February I had a lymph node removed which was confirmed for "Castleman's Disease" pathology. This has resulted in me seeing every specialist possible but still no diagnosis.

In short, Castleman's Disease pathology can be caused by malignancy, autoimmune disease or Castleman's Disease itself. My haematologist is convinced I DO NOT have Castleman's or malignancy.

I found out about Behcet's after doing my own research. My symptoms have mainly been:

- Eye floaters (for around 6 months now)

- Random acne-like spots on my legs/arms/hands

- Joint pain (going for ankle arthroscopy next week)

- Cherry angiomas (blood vessel growths on my skin)

In the past 2 weeks, I have also developed a tender lump under the skin on my left shin. I also have discomfort when walking in my upper calf (just below the knee) and I am worried about DVT.

I had a random outburst of 5 mouth ulcers in a 6 week period a few months back but nothing since or before.

I do not want to be that person who goes to the doctor and suggests a condition in fear of being labelled a google hypochondriac.

Does this sound like Behcet's to anyone?

Thanks

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Hey! Step one is getting with a good rheumatologist because many autoimmune disorders present with similar symptoms. I was only diagnosed with Behcet’s after ruling it other causes. I had suspected it once because of a TV episode about hard to diagnose diseases. The woman had all of my symptoms, or most, but she had eye involvement which I was told I had to have. Finally a few years later my dentist saw how prolific my cancer sores really did get, and told me they were way more ulcerated and numerous than expected, and took photos along with the serious suggestion to gontslk to the rheumatologist. At that point my rheumatologist announced that he knew what I had, and after almost seven years of searching I had my diagnosis. I was so afraid he’d take the diagnosis back so I never mentioned having heard of the disorder.

Frustratingly, I found out that a GI doctor five years earlier had suspected GI Behcet’s, which I do have! I would have periods of intense GI issues with nausea, bloating, and epic bleeding. The amount of bleeding had shocked ER doctors who couldn’t find the source of the blood. Had they pursued a line of questioning at that time with my rheumatologist, it could have gone better for me with treatment options. I did eventually have anterior uveitis, but thankfully none posteriorly as of yet. I’m in a relapse flare and need to have my eyes checked soon.

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What sane person doesn't use the Internet to research health concerns in this day and age, especially when our GPs are so overworked? Behcets presents in many different ways. I'd say talk to your doctor about it. If they suggest you are getting above your station, change your doctor.

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Even though there isn't a definitive test for BD, one thing that does ring true for most- is recurrent oral ulcers, as in multiple times a year. An episode here or there, doesn't usually cut it. Normal people also get mouth sores too :-/ As the other poster put it- a lot of autoimmune diseases mimic each other because the underlying issue is overinflammation.

Rule out everything, test negative for everything. Continue to research for yourself- (that's how I diagnosed myself so it works) and overall take care of yourself. Stay up on sleep, and eat healthy. This is critical and works for ANY disease. Cut sugar, those with autoimmune and "norms" will always benefit from that change.

As for your specific concerns,

Does your acne like bumps look like Erythema Nodosum?

There's a blood test for DVT- proteins break down and it's testable. I thought I had a blood clot in my leg once because it was SO HOT in my thigh and the pain woke me in the middle of the night. Tested negative. Get tested for ANA (thats lupus) and sjogren's syndrome, possibly rule out sweet's syndrome too. I would suggest to get a slit lamp test done on your eyes- as that can show inflammtion and can be useful in diagnosing BD (if thats what it is).

Above all, keep a journal of all symptoms- when and what and medicines... Along with what is going on in your life. Stress triggers things. When I look back to my notes, it was SO obvious. But unfortunately, when were in the moment of life, we are so oblivious. Sometimes all the symptoms dont show up at once. SO WRITE IT ALLLLL DOWN.

And again, to be a broken record. STAY UP ON SLEEP AND NUTRITION. I SWEAR BY IT.

good luck and keep us posted.

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from my experience it took 5 years for my diagnosis they rule out every thing first intialy I was told I had mylodyplasia a form of cancer you symptoms are very similar to some of mine got to doctors as many times as it takes the prob with bechets is there is no definite test you have to hit so many of the symptoms before they confirm it I'm currently on a clinical trial hopefully it will help me and opossibly others one thing for sure its a horrible illness with no cure at the moment

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Thanks for all the replies.

The hardest part for me at the moment is the great variety of symptoms and not having one specialist prepared to oversee my case. I was referred to a rheumatologist who did some blood tests for RA/SLE. When they came back negative he emailed to say I was clear and there was no more he could do for me.

For the past 5 months I have been having a lot of neuropathy as well. I wake up every night with pins and needles in my arms and I have constant tingling in my legs throughout the day. I know this is probably going to result in a neurologist referral - but it frustrates me that this will be the 6th consultant I have seen. I would just love for someone to take charge and look at the symptoms collectively.

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You could ask your doctor to refer you to a Behcets Centre of Excellence if you are in the UK. They are centrally funded so won't cost the referrer anything, and part of their brief is to facilitate early diagnosis. Read about them on the Behcets Syndrome Society website.

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Rooser1 thanks for the heads up about the blood test for DVT. Did not know that.

OP - if you suspect a blood clot its best to go as soon as possible to the doc to get tested. If you wait, like I did on my first one, it could become whats called "calcified". This means it hardens and becomes a permanent fixture. Mine it still there (since about 2009 or so) and is a big lump. This situation is better avoided. You may need to demand a test if the doc blows you off. If so... be strong. Its your health not theirs and a blood test or ultra sound is worth it. Ask the doc things like if it is a blood clot and its not treated what happens? Ask if it was his loved one would he like a simple test to rule something out? Be strong and tactful if needed.. Hopefully its of no concern.. good luck. be strong. you are your own advocate.

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hI I'm so sorry you are going through this it awefull.

I would definitely go to your gp and ask to be referred to the bechets centre at Liverpool. you will need to be diagnosed by a variety of specialist doctors. at the centre. good luck don't give up x

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Hi Leeds229 Have you had a look at our Factsheet on Behcet's? We suggest you may like to look through the Overview sheet and if it is then ringing any bells, perhaps take a print out with you to your GP or consultant and let them know which boxes you think you may tick. Best of luck in seeking the correct diagnosis and of course, the right treatment for you. behcets.org.uk/wp-content/u...

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