Hi my names Jules I live in suffolk england. I have behcets and find it hard to meet people with the same thing in england. Its nice to know there are others out there. Finding the whole thing hard going as each day is differnt. Like to get to know like minded people who understand what it is like.
Im a sufferer of behcets for 10 years. Anyone who has this condition
Hello, everyone!! Although I am relatively new with the term Behcet’s Syndrome, I have been dealing with it for at least two decades and am curious about what others do to make it through a day. I am one that prefers not to journey alone and if there is anyone out there like me, they need to know about me too.
I’m new to this group. I have been diagnosed with Behcet’s and have spent the last couple of years trying to get my symptoms under control. I look forward to getting to know everyone. I live in SC.
My daughter has Behcet’s. She also has dysautonomia. The autonomic nervous system regulates and coordinates all the behind the scene bodily functions, including the cardio-circulatory system, digestion, breathing, sweating, temperature regulation, etc. Very slow (50/min) weak pulse, very low blood pressure (between 70 and 90 systolic) are responsible for the terrible weakness and so she has to stay horizontal almost all the time as there is not enough blood being pushed up against gravity. Getting up or even just sitting up can bring on an attack - they call it pre-syncope, like before fainting - it makes all systems go crazy at once - heart rate jumps right up to 180 with profuse sweating, shaking and jolting and urgency for the toilet. Eating and toileting can also bring on an attack. Then there’s the overwhelming nausea, brain fog, headaches, chest pain and chronic diarrhea.
Does anyone else have such symptoms?
I HAVE BEEN TOLD THAT I HAVE BEHCET SYNDROME AND WOULD LIKE IMFORMATION ON WHATS GOOD TO DO AND NOT.WHAT TREATMENT IS GOOD AND IF YOU CAN REFERR ME TO ANY GOOD DOCTORS IN SYDNEY N,S,W. THANK U NICK
Hi all
I’m Kc I’m interested in this condition because my wife Jessica has it and she can’t take much more. We have only been together for a couple of years we have a son Torin he’s almost a year and a half old. I’m more worried about Torin than I am myself. I lost both of my parents when I was very young . I know that Jess understands this but she can’t help it she is in so much pain when she has an outbreak neither one of us have had medical insurance since I left the Military and we don’t make enough to get our own so she tries everything we can afford.Jess has tried to explain this to doctors here in Wa. but most of them have no clue and don’t care enough to look into it. Personally I’d like to choke most of them but that wouldn’t help Jess feel better.Anyway I’m trying to get her to get on some of these blogs maybe someone could talk to her and give her some sugestions … thanks
Kc
my daughter at age 14 was diagnosed with bechet’s.that was 2.5 years ago.aside from shortness of breath and feeling dizzy with excersize (she was noted to have evidence of serositis on her chest x-ray that same year),she has been symtom-free. is this possible to go this long without symptoms? I wonder if she was mis-diagnosed?
Hi, I`m Vicky,mum to 3 adorable kiddies and I have Behcets disease…I would like to get to know others who suffer with Behcets and to learn more about this condition.Although I have suffered with it all my life I have only been diagnosed for 2 years.
I have been left disabled because of behcets and find every day tasks very hard.
Hello to all in the Behcets Group.
I am Eileen, in my fifties, have been with my partner Linnea for two and a half years, and only diagnosed with Behcet’s last year. I’m in Central NH, and looking for others to speak with. My symptoms became worse and I had to leave work on a disability retirement. I am looking for help and hints as to best manage the symptoms of this syndrome. I have Uveitis which is mostly under control with Neoral, just had a cataract operation last week, requiring an acrylic lens implant. My eyesight improved dramatically following the surgery!
I need more energy, I would like to be able to return to doing the things I used to do such as gardening and crafts. What things have some of you done or taken to increase your energy and stamina?
Hi my name is Norma. I found out that I may have BD in June of 2007. The doctors are 90% sure that its BD. I get sores and lesions in my mouth and on my gentials. I also have a very high heart rate most of the time. I would really like to talk to anyone who has BD. I’d like to know more about it especially since there are so few doctors in my are that know how to treat it.
where are you located? In the States?
I’m in upstate NY and my husband was dx in Aug 05. He gets mouth sores,
achy joints, fatigue, short term memory loss, depression, chest pain, only a
couple genital lesions --thank God – occasional skin lesions, sores in his
throat, little outgrowths like a cyst that kind of protrude and cut
themselves off and bleed which is weird, eye pain but never find anything
wrong with them along with blurriness that comes and goes.
He’s taking Enbrel, soma, colchicine, lyrica for trigeminal neuralgia, folic
acid, protonix, occasionally prednisone for bad flare-ups.
Lynne Billington
Hi, my name is Denise and I was just confirmed in my diagnoseis April 15, 2008. Although I have been experiancing symptoms for almost three years. I have the mouth, genital,finger&toe nail, ear and nose sores, skin leasions, psuedo foliculitis, pain and weakness in my arms and legs, major headaches at the base of my skull and behind my eyes, blurry eyes and random muscle spasams/tremors plus other random and annoying things that I am not sure if they apply to behcet’s. I am currently taking azathiroprine and prednisone with cymbalta for my “situational depression” Who wouldn’t be depressed with all of that going on with thier bodies?! I live in Alaska and was lucky enough to find the one team of docs in the state who know what BD is and how to treat it. Whishing everyone luck, Denise
Welcome Denise - Sorry for the reason that you are here, but this group is life and sanity saving for someone suffering with BD. Do not be afraid to ask questions. You will probably find others who have experienced whatever it is that you are currently dealing with.
Looking forward to hearing more from you.
Ruby
arcticpyr behcets-cpt2527@lists.careplace.com wrote:
Hi. First, all your stories are scaring the crap out of me! My best wishes are with you. I’d like to hear your stories about the initial onset of BD and if it’s similar to mine so far. My gynecologist is pretty sure I have BD, after having genital cankersores but negative herpes test (which completely freaked me out that I might have that; now people are telling me that was probably the better option). The Dr acts like this is the only possibility if it is not herpes (anyone know of any other possibilities? I’d love to hear them!) I’ve had severe tingling in my lower legs for last 2 yrs; neurologist didn’t find anything on an MRI about a yr ago (would he be able to see anything on an MRI if this is BD?). I had the flu about 6 weeks ago. Then 2 weeks ago I had cankersores in every gully of my mouth that went away after a wk; then genital sores for about 4 days, and for the last few weeks also had a very sore knee like someone hit it with a sharp object. Does this sound like BD to you? If so, when might expect another recurrence of genital sores? Do they get more frequent with time? How fast will it get worse like insides or eye? I just want to set my expectations. What percent of people with BD have a mild case Iinfrequent outbreaks) and what percent are in bad shape? Did you have any sort of flu right before you got it? Could I ask any more questions! 
Thanks.
Hi my 21 yrs son has behcets he was diagnosed 4 yrs ago then my husband was too and the consultant is sure from info i gave him that the eldest boy 24yrs has it too but at the mo he feels well and wont get checked out …
my youngest has had all kinds of problems including needing eye operations due to bleeds and the start of this big flare was a DVT and so it has gone on …
he is now takin a drug called aluminumab as cyclosphorin didnt work for him … so far he seems to be better
he is also in other drugs too and eye medications
HI All, I just got diagnosed this last April but had symptoms off and on for four years or so. I also have Degenerative Disc Disease so most of my arthritis pain had been treated with anti-inflammatories and pain meds to begin with. We found the Behcets when my eyes started getting inflammed. I’m still learning but I’m worried about the possibility that my brain is inflammed because I lose words, get scatterbrained, headaches, dizziness, and muscle twitches. Anyone else deal with neuro issues?
I’m a stay at home mom who applied for disability for my DDD in 2006, just so happens the Behcets came while I’m awaiitng my court date. We think we should be ok now cuz of the nw diagnosis along with the other one. One son, sailor husband so I am frequently alone. Meeting lots of new people.
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
Life is about health, family and friends, but sometimes its hard to keep focus on what is most important
I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat 