Hi everyone. 'Tis an honor to be included among such amazing people...and also a total drag. Saw an ophthalmologist this morning, and after bringing up my symptoms to him, he said it was likely Behcet's. This is freeing because now I actually have a word for this bodily nonsense rather than pure speculation, however, it also means this might follow me the rest of my days. Some symptoms, such as genital and oral ulceration, are common in this disease, while some like my recurrent interstitial cystitis, tinnitus, peptic ulcers and migraines, aren't uncommon either, but I also have a few sideways symptoms not really seen on the diagnostic criteria, including central serous retinopathy, and heat sensitivity. Doc also said I had severe dry eyes, (4 out of 10) an "enlarged optic nerve" in my left eye. (optic neuritis? something else?)
Anyone ever get CSR or optic neuritis? I always thought that was an MS thing. I recently had MRI for strange neuro symptoms, (numb patches, weakness, speech difficulties.) It was clear for MS lesions, but I know it doesn't pick up everything.
Also, this skin thing...welt type stuff. (pictured) No idea what it is, it doesn't really itch, and it doesn't look very angry either, so I don't think it's EN....what on Earth could it be?
Well, my dear, a qualified welcome to the club - only qualified cos tis a shitty club to belong to! The 'rare' symptoms you mention have also been mentioned time-and-time again over the past eighteen months or so on here, so you'll find some takers I suspect.
The welt type thingies - could be a type of urticaria (also known as nettle rash). These welts can be faint or very red. They're usually raised and mostly they're very itchy but not always - when my son was very small he used to get them whenever the weather was cold; in fact he got them so badly that I've rushed him off the bus and into the doctors' surgery as we passed. The thing with urticaria welts is they disappear as quickly as they appear, so there was I, a very panicky woman with a clear skinned healthy 3 year old in her arms!
The skin of BD people is a wondrous thing and you are likely to find yourself with all manner of pretties over the years. If ever you are worried or concerned, if something hurts unduly or makes you feel more poorly than usual, or if something just 'doesn't feel right' then badger your medics until they listen to you.
I would have thought that they were hives too, but they aren't very hard, nor do they itch...they are hot and puffy. I couldn't connect them to anything I came in contact with. It was very strange; my husband would put his thumb on my back and push, and one would pop up in the same place as the pressure a few hours later, or the next morning. Almost like inflammation of some kind.
I've had that skin thing before but never lasted long enough to have it checked if somebody does know what it is I'm curious too I hope you can find a good treatment now that u know what it is
Sorry to hear you've been ill,behcets is such a horrible crapy illness.welcome to the world of BD that everyone wishes they were not in! :/
I have had all the ophthalmic symptoms you have mentioned and swollen optic nerve,optic neuritis.
I also had (currently treated so do not at the minute) uveitis which left my eyes very sore & light intolerable.
Neuro symptoms have been my worst,agonizing migraines too.
If you ever want to talk just send me a message,I'm 23 and have been diagnosed for a couple of years now but as I am sure a lot of people are in here,very knowledgeable of BD,symptoms and treatments! I try to read as many papers,medical journals as possible and have had many of the symptoms this horrible illness can bring!
Hope you are on the mend soon
Rosie xx
Thank you so much for the kind welcomes, right now, my health seems a bit better than other times, and I glad to say that my genital ulcers have been in remission for around five years now. I think those are the worst; I wouldn't wish them on anyone except pedophiles, lol.
Hi it's me again! as I was saying before, I was pretty excited like you that I could tell people I had a disease called BD, I was no longer a hypochondriac.
I have the body rashes, dry eyes, I'm sensitive to sunlight so I always wear sunglasses which make me look v pretentious (I heard!) Its all In my left eye? my eyelid drooped so badly I grew my fringe over it like an 80s rock star (still have it) I had to have a blepharoplasty? now I need an eye lift on my good eye so they match up, thank Buddha for my good eye.
I could go on and on boring….oh yeah, like you I can't go in the sun or heat (lived in the desert 6 years why???)
I get an itchy raised rash, ulcers and severe diverticulitis oh what joy. It is strange that BD does affect us all differently.
The plus side to all this is that I can tell the day that I will start my period because my left eye flares up and I just started seizure meds which make me completely loopy and extra humorous and I don't gain weight
Since finding this site I find humor is a common trait which is nice.
ok I'm rambling now so i'll stop.. welcome to the laugh or cry BD club xxx
Hi and welcome - I wish you weren't eligible to be here!
Be aware that Behcets migraines can cause the numbness weakness and speech difficulties that you mention. It is a form of Hemiplegic migraine that does NOT disappear as the symptoms of a normal hemiplegic migraine do.
You need to ask to see a neurologist with experience of behcets and to start on anti-migraine medication such as Pizotifen!
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