Do I have Behcets?

[gsull10]

Hello,

I am fairly confident that it is Behcet's, as I've had a couple of doctors say they suspect it but did not want to give me the diagnosis.

Around 16 months ago I was admitted to hospital for 7 days. Over a period of 5 weeks, my symptoms worsened and I went to hospital after passing out in the shower. It started with a flu which lasted two weeks. By the time I was admitted to hospital my symptoms were as follows:

Severe ulceration of mouth, esophagus, nose and genitals- I was unable to eat solids or talk for around 3 weeks. I had ulcers on my voice box.

I had inflamed ankles that stopped me from walking. I had acne like sores on my face and scalp. My eyes were sore and looked bruised. I had blurred vision for a short period of time.

16 months later and I have not had a flare that was so severe. I have ulcers in my mouth around 50% of the time - usually only a few at a time. I find that eating anything high in fat also causes this. I regularly get sore knees if I sit in a confined space like a train, car or plane for more than 20 minutes. I am regularly feeling slightly sick, weak and tired. I also have started getting blurred vision if I try reading - but it's also fine other times. I also recently had ulcer-like sores and rawness in my nose that lasted for 4 weeks, which was mildly painful, but more annoying.

I have been tested for everything the doctors could think of, from all sexually transmitted diseases, other auto-immune diseases (including Pemphigus Vulgaris), yet nothing returned positive. I also had plenty of doctors probe at me with endoscopes, biopsies, swabs etc. that ruled out anything that could be tested for.

Basically, I wonder if having Behcet's means that I WILL have regular flare ups, or do some people go years without, but still experience constant mild symptoms like I do?

Thank you very much!

[OpsDave70]

Wow, so sorry you went through such a severe bout! Have you been checked for Wegener’s granulomatosis? It is a cousin to Behçet’s and affects the areas you describe. I think they might actually treat Wegener’s the same way, but you really need a firm diagnosis as to which one they think it is. In Wegener’s you can actually start getting deformity in your nasal cartilage because of the ulcerations. II get painful ulcers inside my nose, but my doctors continue with my Behçet’s diagnosis because I don’t have the deformities developing as in Wegener’s.

Your flare-ups could continue or they could go into remission. It is hard to say, but if you’re on aggressive biological, chemo and Plaquenil, your ulcers should improve or disappear. Your doctors need to be aggressive in your treatment because when you have ulcers you can see and feel on your body, other damage is probably occurring inside your body that you’re unaware of. In my case, the Behçet’s has attacked my brain, hypothalamus and pituitary, rendering most of my endocrine system inoperative. It also attacked my pancreas and I have exocrine insufficiency. I have to take hormone replacements to cover adrenal, thyroid, kidney and pancreatic function. It is a pain but it keeps me upright and somewhat functional.

I would recommend that if your doctors are being vague and are avoiding a firm diagnosis, they need to send you to a specialist who specifically handles Behçet’s patients. You need the firm diagnosis so your treatment can be aggressive and focused. Prednisone might knock down your flares, but it is only to be used as a temporary Band-Aid. If you are out in the right treatment, it is possible to put your Behçet’s or Wegener’s into full remission where you may not ever have another flare again. Treatment typically lasts a couple years. I am about six months in and I have been having some complications because it took me too long to get a firm diagnosis and damage was already underway.

Are you in the US? I can help you find a good Behçet’s doctor if you like.

Dave

[gsull10 in reply to OpsDave70]

Hi Dave

Thanks for your reply and really I appreciate your suggestions. I have looked up Wegener's and don't see too much similarity with what I have been experiencing.

I am in Brisbane, Queensland, Australia. There is a hospital in Sydney that I've heard has an interest in Behcet's patients, but unfortunately that is too far. Hopefully I can find a specialist in Brisbane that is able to confidently diagnose my condition or find someone who may be able to.

Although my symptoms are never as severe as they were when this started, it would be great to have a firm diagnosis to ensure nothing more serious is happening inside my body.

Thanks!

Gavin

[gillianTS in reply to gsull10]

Hi Gavin

Some of your symptoms are the same as mine I have BD and Vascular Ehlers Danlos Syndrome (EDS) and sometimes it is hard to differentiate between the 2 conditions, I think what Dave has said makes sense because so many of us are dealing with other conditions too so best to keep an open mind with everything until you have seen a specialist and do not hold back on suggesting conditions if you consider you may have them, I had been waiting 30+ years to get a BD diagnosis simply because nobody could give me an answer on both oral and genital ulcers and I was simply past from one specialist to the next who treated me in there own way, thankfully the 2nd rheumatologist I was referred to diagnosed BD and EDS immediately and it was a massive relief to finally have a name and start being treated for a condition I and most of the specialist I have seen knew nothing about.

I do not have the nose ulcers, I have ankle issues and spent hours in an MRI for feet and ankles to discover I have ankle sheath issues called Tenosynovitis, an inflammation of the synovial sheath surrounding the tendon, I go through periods when they are horrendous and sleeping is perhaps the worst time, I have to have extra padding under my ankles to try and soften the terrible feelings. I also went to a Musculoskeletal Podiatrist who besides giving me inserts for my shoes recommended improving my balance and strength in my feet and ankles.

I too feel sickly on a regular basis always appear tired and have little attention span, also have oesophagitis, gastritis, erosive duodenitis, have just been diagnosed with Blepharitis (posterior)

and Evaporative Dry Eye and given drops night and day. Unfortunately I ended up being admitted as an emergency on Monday after suffering for ages with terrible abdominal pain over years which has got acute and finally after giving me a CT scan they have discovered I have a incarcerated indirect inguinal hernia which I have to get sorted out but I am feeling very apprehensive with having connective tissue issues and everything that goes with my conditions, see a specialist tomorrow so hope I will get some answers to my many questions...

Anyway Gavin looking at an earlier post this year the following was written about a specialist in Brisbane which might be helpfull to you:

"I see an immunologist at greenslopes private hospital in Brisbane. He isn't an expert in behcets but diagnosed me and treats me for the condition. Name is Dr Carl Kennedy.

I also have a great eye doctor. Dr Diane Conrad at the Wesley.

"

healthunlocked.com/behcetsu...

Hope you can get some clarity and suitable treatments soon.

Gillian

[Nanakoko]

Hello your symotomes are the same as mine , yes this is BD ! Sorry ...

[gsull10]

Thanks to everyone for their responses. I have seen a new GP who has referred me for a variety of blood tests (going to get them done today). He said once those are back he will refer me to a rheumatologist. My GP seems confident it is Behcet's.

[UKADMIN Partner Behcet's Syndrome Society in reply to gsull10]

Hi gsull10 you may find more Behcet's patients and advice re Australia here: rareconnect.org/en/posts/0d...

Good luck with finding the correct diagnosis.

[Ashveer in reply to gsull10]

Hi, I am from Canada, and Did go to the Rheumatologist, please know that if your Rheumatoid Factor is elevated (normally it is 14, and it is more than this, you must insist on further investigations) - I was found to be nothing remarkable, but my rheumatologist failed me to investigate then why my RF was Positive at 16.5; last thing, you must get BRAIN/SPINE MRI - that is the only way to show acivitity of inflammation in Central Nervous System, before it s too late...I had to have double vision, and severe diability of speech before doctors took me seriously, that I needed to see Neurologist...I hope you will do this ASAP, don't wait, it is all in your Brain....that will start your treatment...good luck...

[Ashveer]

Hello; your symptoms ulcers, joint stiffness, are similar to mine as I am now clinically diagnosed for Bechets (there is no true test for Bechets, I am told), but only way to see inflammation on Brain is by MRI - not CT of Brain, or blood tests, this is how found out, I have Brain Stem Swelling, and going by my physciall symtoms of aphtous canker sores, epidymitis, hemmorhoids (one or two incidents of each in the lat few years), now doctors feel I can be treated for Neuro Bechets as it involves the Central Nervous Systm - so far, the Disease has not progressed to my Spine, but it has progressed from inflammation of blood vessels to Brain Stem Inflammation, and that is how it disables people, as I best understand, it has various, from beginning to full course in lifetime....staying positive...and wish you the best this way, please request MRI updates from your medical doctors...of both Braina and Spine...that is only way to confirm inflammation and lead to some answers...