The day you are diagnosed with any chronic illness will be the day your life will change forever and will never again be the same! So many emotions will flood your mind, and you may see your life pass in front of your eyes.

Over the days, weeks, months and years, you finally realize that this is now your life.

Many people only see a doctor when they become sick with a cold, flu, a broken bone or a sprained muscle,.  Some may never visit a doctor. Their pain will be acute, and once the cause is treated, the pain will leave. The medicine they take will only be for a short time. However, those with a chronic illness have lives that are filled with doctor’s visits, medicines, tests, pain, exhaustion and grief for “the old life.”

As you move into the existence of what is now “your life,” you will find yourself losing the ability to even enjoy what you did in your old life. Spending time with others now may even feel uncomfortable. The ability to participate in activities you once did becomes more and more difficult as the days go by. You will then find yourself wishing for your old life, even wishing you could work. Wishing you could play sports, wishing you could go to the movies, wishing you could cook, clean and dance. All of these things become much more difficult when living with an illness.

Behcet’s disease is special; it has the ability to be so unpredictable as well as unrelenting sometimes.

I have a more severe form or a “complete” form, if you will. I live with most of ALL the symptoms associated with it. I have folliculitis on my thighs and back that never goes away, central nervous system/neurological (brain) problems with inflammation, partial seizures, headaches, neck stiffness of varying degrees most of every single day, confusion, coordination issues along with balance and vertigo problems, oral ulcers and genital ulcers bi-weekly.

It used to be a constant, unrelenting problem to deal with but since I have been on CellCept, they usually are less frequent and fewer in number. Up until April 2012, I would experience 30 to 50 ulcers in my mouth all at ONE time!! It was so, so painful.

I have gastrointestinal symptoms, ulcers throughout my GI tract, severe abdominal pains and chronic diarrhea, nausea/vomiting, eye inflammation— specifically Uveitis/Iritis, joint inflammation with severe body pain of varying degrees, lung inflammation— or Pulmonary hypertension, heart issues with increased heart rate, an episode of pericarditis, palpitations, chest pain, shortness of breath, thrombophlebitis (superficial blood clots in my veins) as opposed to DVT (deep vein thrombosis) which can be fatal.

Raynaud’s phenomenon, also caused by Behcet’s, is triggered more often when I am cold or stressed. During an attack, little or no blood flows to my affected body parts, which is typically my hands or fingers and, more often than not, my feet or toes. As a result, my skin may turn white and then blue for a short time. My toenails usually turn purple/bluish, and as blood flow returns, the affected areas may turn red and throb, tingle, burn or feel numb.

It is difficult to be confined to my home, to remember a former self who was bubbly, outgoing, goal-oriented and focused on my future. The comfort of a home that so many people look forward to during their days, sometimes can become a source of suffocation or prison for me. My personality and all that I identified myself as is now a fond memory for me to grieve about every now and again. That’s a normal response when dealing with such a life-altering reality.

My new reality is like standing on the edge of a cliff with a brisk breeze blowing every single day, tethering on the brink and knowing that there’s going to be one day that the breeze turns deadly and off the edge I go.

However, I have acquired a perspective in life that few healthy people will ever know. So many people are caught up with their lives and the busy coming and going, they do not realize how much is taken for granted. The ability to get to sleep at night, to wake in the morning and get out of the bed with ease, get their tasks and responsibilities taken care of without pain, to maintain focus and alertness as necessary. To have an appetite and eat what they choose and when they choose. To actually get dressed and be able to go out of the house because they have a career or place to be— and have it not be a doctor’s appointment or a trip to pick up medication.

Mostly, they have no idea what it is like to be me!!! So while my situation in life is unfortunate and I am very limited, I know things could be so much worse! I know that with my illness things may get worse! Knowing this makes me incredibly grateful. I can appreciate each day for waking up, and I can be happy for this even when my digestive system is in ruins, or my kidneys, liver and heart are doing just enough for me to function. I choose to stay as positive as I can and be as happy as possible with what does work for me.

114 thoughts on “Confessions from a Patient with Behcet’s Disease”

  1. Andy Barwick says:

    Beautifully written and eloquently stated! Always in your corner as long as I am breathing, one day at a time. Much Love!

  2. Kerri says:

    Having this disease, it is so hard to explain to everyone how you feel, but you my dear, said exactly how I feel.

    Thank you so much!!!

  3. Leslie says:

    Kerri, you know you are very welcome & I am happy that we have become friends even if it were through this awful disease xoxx

  4. Leslie says:

    Andy, thank you!!!! I appreciate you & your support…..you are doing great things & I just feel blessed to be in your corner as well!! 🙂

  5. Victor says:

    Hi,
    Most of the problems you are going through are because of the medical system you live in. I was diagnosed about 3 years ago, well thats when an ulcer in my throat that would last over two years came out, i did have many of them since I was a kid. That ulcer would just not let me eat, or drink water without extreme pain. I had other symptoms too. I went to the doctor almost two years after when i got one in my penis, thinking it was an STD. I saw at least 6 doctors of several kinds including dentists and dermatologists, none of them knew what it was and couldnt help me at all, they only gave me pain killers and antibiotics (typical -_-). So I took matters into my own hands and looked up the symptoms,and looked for a doctor in Mexico. Homeopathy helped at first, but i hate taking medicine and they gave me a whole bunch like 6 times a day. I also tried magnets, and my throat ulcer felt better, but never finished the treatment. Then i learned about mother cells (or what ever they call them in English, found out about it in Spanish). New natural pills (i like natural stuff better) that enhanced the production of these cells, and by doing that, your whole body will feel better, and your defenses will go up. My two year old ulcer disappeared within a week, same as the one in my penis, never got any in my mouth after that, and no other symptoms showed up. It’s been months and no signs of that aweful disease, no ulcers, no nothing, just enjoying life even better than before. The bottle of pills was about 80 bucks, and other options/medicine. I keep in mind that all that may comeback, because people say “cant be cured”.I only finished one set. If you have any questions let me know via email. Sorry about my bad English.

  6. Tami Mulder says:

    My diagnosis worked the other way around for me…..it was, like, FINALLY! I never had “the old life” as I never knew a life without Behcet’s. I remember suffering terrible migraines when I was a small child…that was the start of my life with Behcets. Add all the rest of the garbage (ALL the symptoms as Leslie describes) as life went on. I was misdiagnosed with many ailments throughout my life, but never treated. (Drs even accused ME of developing Ulcerative Colitis for ATTENTION…which, of course, was NOT true, and were Behcet’s ulcers.) My “FINALLY!” came in 2006 when I was 46 and finally diagnosed with Behcet’s when retinal vasculitis and vitritis was added to my many ‘conditions’. FINALLY! We know what’s wrong with me and it’s *NOT* all in my head! And THAT is what I can finally start to live again, because people actually believe me, including Drs, and I get the meds I so disparately need. One thing I learned a looong time ago, I REFUSE! to let this beast beat me! REFUSE! I’ve had it for 53 years now and I’m still going. I still crochet with my hands and even garden…..and yes, it hurts. When you give up, is when it gets worse……don’t ever give up…that is when this beast wins. Keep fighting!

  7. Annette Jones says:

    Thank you for sharing this ! I live with 1 other person & I’ve tried everything, even the Spoon Theory & so often they forget.
    I’m currently going through changes in medication due to my liver & kidneys not being able to handle the amount of medication I am on. I was tired then & I’m tired now. For some reason, my roommate thought it be best to smash a rubbermaid I just got to secure some of my personal items in & store rather than allow me to have it for 24 hours & possibly try to get the task completed.
    I can identify so much with your post & have even posted the same things on my Facebook page, explained in intimate conversations, etc. But people just don’t get it sometimes so I mainly stay quiet & to myself. Sad for them because I still have a wonderful sense of humor however I only really get to let the doctors see it. I laughed all last month running to 5 or 6 doctors & the E.R. Showing them I had “Cankles”.
    Your writing gave me the calmness I need to stay strong & carry on today as I have to get myself to the doctors. I hope you have a wonderful day !

  8. Angela says:

    Thank you! I had a few tears come to my eyes when reading this. I am a 31 year old wife and mom of 3 beautiful children who deals with being on the edge of the cliff on daily basis! Behcets and lupus have been part of my life since I was 14.

  9. Kim says:

    Our stories are one in the same. Staying positive is the one thing I CAN control/ Thanks for sharing your story, it’s nice to know your not alone! Between the prednisone and colchisine, I think I’m ready for the next jump in meds. I will look into the CellCept, thanks!! Good luck and keep smiling 🙂

  10. Tamara says:

    So perfectly said!! My husband too suffers from BD & has been diagnosed for 17 years, over half of his life. I can relate to most all of your symptoms (from the wife’s perspective). Difficult for him to stay positive most times. But we take it day by day. Your statements definitely hit home & brought some tears. Keyword is take it day by day & keep your eyes open to the positive!!!

  11. Leslie,
    Thank you for sharing a small part of your story. It’s impossible for anyone to understand it all. Like trying to explain to other people what Behcet’s is and how unpredictable it can be. How you can’t go to the ER because their doctors will ask why you’re not a middle eastern man. How your friends will tell you about Hospital X that has specialists in everything and they’re sure it will help.
    I’m just the spouse of someone who suffers from Behcets and even I’ve given up trying to explain it to others. Even most of the techs at our pharmacy think my wife has cancer based on the meds and their expense.

    Good Luck and hang in there. You’re really not alone.
    Bill

  12. Silvia says:

    Hi everybody. It is very painful to have this syndrome, I know that. I am not sick, but i rather be that way and not see My daughter feeling so sick and sad, angry sometimes. I feel helpless, i have done everything i can, and i cant help her. Trying to live one Day at a time, not thinnking too much about the future, praying everyday for a miracle. I try not to lose My faith and I pray for all of You, who have BD. We are from Costa Rica and this illness is very uncommon, so do any specific examinations and drugs, but My daughters doctor is a excellent scientific that keeps investigating a lot. Hope everything will be ok. God bless You all!

  13. Alley says:

    As I read this I cry. It states so eloquently what I long to make others understand. So few really get how it can be. I am not to the degree you are but close. It is frustrating when people act like I am faking or am just lazy because of Behcets. Many times I feel so alone even though my family tries to support me. They do not really understand and friends with similar autoimmune problems can relate but it is still not quite the same as another person who lives with the exact same pain. THANK YOU for helping me not to feel so alone.

  14. Terri Gury says:

    Everyone’s stories are a little different yet similar. I tend to try to ignore the more minor symptoms and only give in to this disease when I cannot go on any longer. The constellation of symptoms is always present to some degree, but ever changing any utterly frustrating. Over the past 21 years, since being finally diagnosed, I have tried almost every immunosuppressant out there plus the always present prednisone. A visit to DR. Yazici in NYC changed my life for the better. He suggested that I have a persistent very active case of BD and to try Cellcept, Humira, and prednisone in combination. Yes, I know, what a whammy combo of extremely potent medications! But I was desperate, and so the side effects from the meds are welcomed rather than suffer to the degree that I was. Speak to your Rheumatologist about combining immunosuppressant therapies. It may help you also. Also, I have learned the hard way, that even though you may think you are fine, unless you really take of yourself this disease will rear it’s ugly head. It’s an ongoing balance that in my case is usually kept to myself. I really try not to dwell on the negative things and surround myself with things that make me happy.

  15. Barbara Hughes says:

    Thank you for reminding me what my daughter goes through daily. As the family member who lives with a BD sufferer, I see firsthand the agony she tries to hide, never complaining. And see the deep disappointment on her face when she is told at the pharmacy that Medicaid will not cover the med she needs for her extreme faliculitis although she has become immune to all the others and this one was the last med to try. I am going to forward this to every person who has said to me, “Why doesn’t she just get a job?”. Bless you and all those who suffer from BD and those who care for them.

  16. Ryan says:

    I also was diagnosed with Behcet’s in 2007. I struggle with many of the same symptoms, but to a lesser severity. I just wanted to share a few things with you.

    I had severe GI involvement that seemed to be developing, becoming worse than my primary symptom (canker sores). I went dairy free in 2010 (excluding all forms of dairy ex: cheese, milk, butter, milk derivatives etc). This was pretty hard at first but has gotten MUCH easier. I can honestly tell you that 100% of my GI symptoms disappeared in 1-2 months. Also, my oral ulcers take a lot longer to “open up” and are less severe. About a year ago, I went completely vegan and try to focus on raw foods. I find that I react to chemicals (such as aspartame in Diet Soda) in food. The more natural/organic the food, the better. I still suffer with lingering symptoms but I do not feel like I have been hit by a bus when I wake up anymore. I recommend a book called “The China Study” because it links food and health, including autoimmune disorders. I hope this helps someone!

  17. Emily says:

    As i sit here I am crying. That was the most truthful thing I have read. I was diagnosed almost 2 years ago and my health is declining rapidly. I have joint pain that I can not describe and headaches that dictate my life. My family and friends dont realize what I face day in and day out. I struggle everyday with how I can go on. I try to stay positive and take one day at a time but I too feel I am standing on the edge of a cliff and am never sure when I am going to fall. I continue to pray that I will be able to see my beautiful daughter graduate or go to college or get married. I know I am not alone but reading this story has helped. Thank you from the bottom of my heart

  18. Kristi says:

    Thank you so much for this honest, candid account of living with behcets. It is so hard for those of us who have it and for those who care for us.

  19. Leslie says:

    Thank u Kristi for reading & Im glad I was able to share 🙂 & it is a daily battle, just keep on fighting xx

  20. Leslie says:

    Emily, I know all too well exactly how u feel….the headaches & body pain is almost non-stop then the other stuff seems to pile on which is extremely difficult, but remember u can do this!!! Keep the faith 😉
    & u r very welcome

  21. Leslie says:

    Thank u so much because I do belief we def need to be on a different diet than others for certain. It is nice to hear that it has helped you.

  22. Leslie says:

    Thank u 🙂 That is right, keep on fighting!!

  23. Leslie says:

    It is difficult to get others to understand for sure. Sadly most norms walk around with a false sense of security that nothing can happen to them. Well, we know that to be different and things change very quickly. I have gained a perspective that most ppl will never have & for that I am so so grateful. I honestly can say I wld not change anything other than being able to live longer or a little healthier, but having this illness has given me a much more appreciation for life & I have gained more knowledge than I would have if I didnt have Behcets. Having a blog has truly helped me & my faith is what carries me 😉 Hang in there

  24. Leslie says:

    You’re very welcome & you are not alone!! 🙂 Keep on keeping on…

  25. Leslie says:

    God Bless u Angela, I know it must be difficult to handle esp when u have precious lil ones to worry about. One minute at a time is how I live, trying to reduce the unnecessary stressors is a necessity. It is a daily struggle for certain, a strong will to live & those beautiful babies will keep u strong!!

  26. Leslie says:

    Thank u for taking time to read it 🙂 U also hang in there! It is difficult for our loved ones & caregivers too so u keep on fighting as well!!

  27. Leslie says:

    God Bless you & her!! It is rare & very few Im sure where u are. Please never give up & keep ur faith!!

  28. Leslie says:

    Thank u for reading & allowing me to share! U are not alone, but I know it is a lonely disease bc u rarely have anyone close to u that shares it. Our loved ones can only understand & support so much, it is hard on them as well. U dont ever allow anyone else to burden u with their inability to sympathize & support. That happens, u just keep waking up each day & facing this min. by min. Fight on!! 🙂

  29. Leslie says:

    I do share much of what u r saying, I too visited Dr Y in NYC. He is who confirmed my diagnosis which ultimately led to me finally getting treatment here in NC. I do not respond to oral pred at all except for the weight gain..Lol I have to do the infusions ever so often whenever I am to the point of extreme issues. I am on 3000mg of CellCept & we have just been trying to put off adding anything else at the time being, other than the Colcrys & various other meds related to pain. I also do not get side effects of many meds so that I am grateful for certainly. Long term sure there will be some but I live in the present. I did loose hair, have a lot of thinning but nothing major! Thank u for sharing, I appreciate it a lot 🙂

  30. Leslie says:

    Barbara, thank u for reading & for being a caregiver & support system for her!! It is hard but with the help of our loved ones it does make things easier to cope!!

  31. Doreen Wagner says:

    Good info. Always like to learn more and other forms of treatment

  32. Leslie says:

    Thanks so much!!

  33. trish says:

    i know how you feel I’ve had BD since i was 11 and didn’t get a diagnose until i was 16. its really hard because you don’t know if its going to get worse with time. i remember my friends were always asking why i wouldn’t do sports anymore because it used to be such a big part of my life and i had to explain that my doctor wouldn’t let me. the worst part of my BD was the stomach pain it gave me, i can’t imagine brain issues too. good luck.

  34. Suzy says:

    I am lying here in the hospital bed, the 21st visit in the last year and a half alone. The doctors today were barbaric, laughing at me, mocking and asking inappropriate questions, while I was still in shock from learning I finally do indeed have pulmonary hypertension. Just a day I’m the life… All we can do is laugh and love.

  35. Suzy says:

    A day IN the life, sorry… Silly phone. 🙂

  36. Kim K says:

    It is so refreshing to see a well done, up to date personalized blog about our rare disease. I’m 44 and have suffered for the last 13 years. Took 6 years and multiple misdiagnoses. Thank you all for sharing your stories. I’m sure we would all agree it gives some hope when we are struggling, which I happen to be doing now. Thanks Leslie 🙂

  37. Leslie says:

    Thank u so so much Kim! You keep on fighting & dig in deep! 🙂 Also, I appreciate u taking the time to read & leave a comment. I am actually gonna be updating my story soon as Global Genes have asked me to do so. I agree it would be nice to follow this up. Take care!!

  38. Adara says:

    I just want to say thank you for sharing! I have been with my boyfriend for a year & 4 months! I love him so much! He has been diagnosed with BD for a couple years now before we got together! He has all the things you talked about & sometimes he gets so sick it scares me! I dont want to lose him & I feel I have no one to talk to because I want to stay strong for him! Its so hard to watch someone you love in pain constantly! I would greatly appreciate if we could email each other just to have someone to talk to that understands! My email is adara_odeen at yahoo . com if anyone would like to message me! Thank you

  39. frazel12 says:

    Thankyou for sharing your thought:) my 6yr old son had been diagnosed with bd and is on 1,500mg od colchicine a day including prednisone he still has flares with horrible ulsers:( I have no idea what to do for him, we live in Australia and it seems like no body knows anything..

  40. Lena says:

    Thank you for sharing, it helps me to not feel so alone about this. I was diagnosed 7 years ago. (2006, I was 9 years old) I am now 15 years old. During these seven years, I have been through a lot that none of my friends understand. It has been very difficult for me to explain them what is wrong with me and why i often when to the doctor. I didnt want to tell them about the disease, cause i felt emberassed. I was afraid that they would not treat me like before, if I told them about the disease. I was afraid that they thought I was nasty. I cried myself to sleep every night. I wanted to be like the other kids. I got a lot of medicine that made me chubby. That’s when everyone started to tell me that I had become fat. I lost my confidence. I felt ugly, chubby and just not good enough. Today I am much better than I was in 2006, 2007, 2009, 2010 and 2011. I quit taking the medicine that made me chubby (prednisolone) But I have to take Imurel, Colchisine and Thalidomide. I hope it is possible to cure BD in the future.

  41. Debbi Brown says:

    Thank you for having our story out on the WWW! You described many of the symptoms I have had over the years. After reading your story I don’t feel as alone in my journey.

    It took over 21 years and many misdiagnosis to finally you have Behcet’s disease and I am the one who brought the disease to my doctors attention because I got tired of being told I had Crohn’s then didn’t, then did, then well maybe its Lupus, well maybe not may its all in your head. So I did my research and went to OHSU in Portland Oregon and one of the doctors mentioned Behcet’s then dismissed it so I took what I knew back to my PCP in central Oregon and we sorted things out from there. After more tests and biopsies 4 out of the 5 doctors I was seeing at the time all agreed I had Behcet’s. The hold out was Rheumatologist who said he thought I had Crohn’s ccause I was to white and never been to the silk road area. That was 4 years ago.

  42. Leslie Keel says:

    Hi sweetie!! I am just now checking back in on here & seeing your comment. Thank you so much! & I would absolutely email with you!! I know how difficult this life is, Id happily try to help & ease your mind a little bit!! I will email ya for sure. Just keep supporting him through each step!! 🙂

  43. Leslie Keel says:

    I am so saddened to hear that you are going through this with your son. I can only imagine the difficulty you have faced as he is a child. It is hard enough as an adult. I work with helping patients connect with organizations as well as Drs & I would gladly help in any way that I can. I do spend most of my time researching and as I stated I voluntarily help spread awareness and point ppl in the right direction. My email is lesliekeel32@gmail.com. Please feel free to contact me. Take care!! Leslie

  44. Leslie Keel says:

    I am so sorry for what you have endured. I know many other youths in your same exact place. I can & would love to talk more with you as I can connect you with others with BD who are your same age. This is so hard for all, but it is such a cruel thi.g to deal with at such tender ages. Please contact me @ lesliekeel32@gmail.com I really hope to talk with ya 🙂 Take care!!

  45. Leslie Keel says:

    If anyone would like to correspond & get in contact with me, please feel free to send me an email at lesliekeel32@gmail.com

  46. erin says:

    It has been 6 days since my best friend Laura lost her life to behcets syndrome. She was only 28 years old. She would Have been 29 on january 10th. Christmas was the day she took her last breath, ending her struggle that lasted about a year. I am shocked still….my best friend whom i didn’t eve know was as sick as she was, i havent seen her in about a year and a half, and i feel like a terrible friend to have not been there for her when she needed me the most. She was amazing….a mother of two beautiful boys and a devoted wife. As well as daughter, friend, and angel. Her motto was “what doesnt kill you makes you stronger”. Always positive. I hadn’t heard of behcets until christmas when i found out she had passed away. I dont know much about it, yet i am finding myself yearning to learn about it. I know the main stuff, but i am in the dark on what she went thru the last year of her life. I was hoping that you may be able to help me out with a link or som personal experience to help me understand my best friends death. I need to know what, why, and as much as i can to cope with this cuz it is truly killing me inside not knowing. I know she had 7 or 8 surgeries over the period of time, but her funeral is on saturday, and i need to understand as much as i can before then so i can be strong for her family and have to ask as little questions i can to ease their suffering. I would be grateful for any information you are able to offer. Thank you and god bless.

  47. Kirst says:

    Hi Frazel, I am a BD sufferer in Australia and I’d like you to know that while there aren’t many of us we are out there and would love to talk to you. What part of Australia are you in, please email me (kirst_8601@hotmail.com) and I’d be more than happy to lend an understanding ear or point you in the direction of other patients closer to you. We need to stick together, especially since there isn’t any support available for us in Australia (yet!!).
    Kirsty

  48. Kristi Dalby says:

    I’m 37 and struggle greatly with the weight gain caused by meds. I am more than willing to email you or vice versa…it is such a hard and embarrassing disease and I cant imagine being a teenager suffering through this. My advice, find an awesome support group for young people with BD…or even start one!!! It helps to know other people are experiencing the same thing you are!

  49. Kristi Dalby says:

    1500mgs??? Wow….thats alot. Im on 0.6mg.

  50. Leslie says:

    Erin… Im so sad to read this. Id happily like to talk more. Pls email me lesliekeel32@gmail.com God Bless

  51. Pooneh says:

    Im a single mom of a little boy whom I adore and have been in an out of the doctor’s office for the past couple of years. I have not been fully diagnosed with Behcet’s but all symptoms point to that. It is stressful and more so since I’m the only one that cares for my son.

  52. Dana says:

    Hi everyone, my name is Dana i’m 17 and i have behcets. It all started when i came back from camping and my eyes hurt and i was seeing smoke. My mom took me to our eye doctor and he ran some test on me. He came back in the room and said i had sudo-trummer in my eyes. And that i need to get a spinal tap and a MRI done asap. The fallowing weekend i had an apt. for my MRI. it came back good. So the next thing i had done was my spinal tap and that was the worse thing anyone could ever get. I was lucky because i had 2 great doctors who did it. My tap came back as a high good. it was 23 out of 25, so i didn’t have pressure. I was in the hospital for 3 days and they sent me home. A week later i got a vaginal ulcer the size of a quarter. I didn’t know what it was at the time so i showed my mother. She freaked out and made me an apt. with my OB doctor. I showed her and she said it was Herpes. I started to cry and i wanted to yell at her, because i haven’t had sex and i knew there was no way it was herpes. She came back in with some information and said she might believe i have a rare disease called Behcets Disease. I was mad, She said no one knows how we get it or how to treat it. I think that there is someone out there that knows how to help us. After my one flare up i started having really bad headaches. They get really bad that i cry and scream. They use to be an everyday thing. A week before X-Mas i was at a family party and i freaked out. My head was throbbing, it felt like i was being shocked and i was on the floor in a corner crying and holding my head. We had bad weather that night and my mom could take me to the hospital yet. I felt so bad because i scared my family and friends and they didn’t know what to do to help me. I went back to the hospital that night and they did another test on my brain. It came back clear and they gave me a shot and sent me home. I woke up with my head hurting so they gave me these pills that knock me out for hours. I now go see 4 to 5 different doctors and for a while it seemed like it was helping. But now i have felt bad for 3 days. And i have 2 months of school left and its hard to go to school when your head is killing you and i cant control my flare ups. I need something to help me but i don’t know what. Right now i also have 9 ulcers in my mouth and i cant eat because they hurt. I would love to meet someone in my area Louisville, KY or Clarksville, IN and share stories and help each other. Thank you for reading my story 🙂 Dana

  53. Victor says:

    Hi, Dana you might wanna stop consuming dairy products and flour. That really helped me, be healthy and excercise. It might take a few weeks if not months before you get better, if you do. I also have taken stem cell or any other brand that does the same thing. If you want details about it let me know through email, vikest87@gmail.com. I have been good (normal) since i stopped consuming those things (mostly milk, i drink almond vanilla) and I rarely get any ulcers which I’m really happy about cause my health has gotten better to the point i have a normal life.

  54. lauren mitchell says:

    I was diagnosed with BD when I was 12. The doctor failed to tell me what I was in for. I’ve done research on my own and I have been developing more over the years. I am now 22 and loving life. I’m just thankful for what I have and my friends and family to support me. There’s no sense in moping around all of the time thinking “when am I gonna die?” I still have problems and always will, but I live life to the fullest. Even though I’m not rich and can’t afford medicine, I just know I’m going to be okay. And thanks to Casey who has been there for me the most. Love who you are and be thankful for the life you have no matter how bad you feel.

  55. Matt says:

    Hi Leslie. First of all thank you for being so brave in sharing this with everyone out there and bringing awareness to the light. I have a 20 year old daughter that seems to be showing most of the symptoms of Behcets; however she has not been diagnosed with it as of yet. I am hoping that you are still active on this blog and are willing to be an ear that we can bend if we have any questions. Any further information that you may b able to give to us so that we may be able to help our poor daughter through this would be greatly appreciated.

  56. Virginia Erdie says:

    I’m 56 and right now lying in bed due to what seems to be Behcets. I have upcoming rheumatology and blood tests coming up again, but probably they will all be negative. All the tests seem to be a waste of money, time, and energy, considering there is no treatment outside of nasty steroid type drugs. I am researching any studies I can access. I came across some medical articles that suggest amino acids.

    Does anyone have knowledge of this?

  57. Jessica says:

    I have been misdiagnosed with lupus for 5 years and recently after dealing with doctors assuming I was self mutilating I finally found a wonderful doctor who prescribed me saffron. I have been on this medication for 2 days and I already feel human again. I don’t know where you are but my doctor saved my life. I’m from Illinois. I hope you find the right one. I fought for almost 2 years with giant lesions and cruel physicians. My thoughts and prayers are with you.

  58. Leslie says:

    Hi everyone!!! Thank you all so much for reading. I will happily talk with anyone who needs help or any support. I will do anything I can to help point you in the right direction. Please reach me via email @ lesliekeel32@gmail.com

  59. Leslie says:

    Hi Matt!! How are things going with your daughter? I would love to help in any way I can. Email me at lesliekeel32@gmail.com

  60. Lisa says:

    Wow, great job, Leslie! So well-written, and perfectly summarized and articulated what it’s like to live with Behcet’s. I, too have complete, refractory Behcet’s, including neuro-Behcet’s (13 years now). I got so sick with opportunistic infections on CellCept that I nearly died in 2008. It has taken years to find something strong enough to take down my disease at all, without taking me down with it. Fortunately, IV Cytoxan finally seems to be helping some. I have seem you on some of the support groups, and ran across your article today; just wanted to say hi and “Great job!”

  61. Tareq says:

    Dear All
    I have been diagnosed with BD in Bangladesh a year back. Am on prednisone, Imuran, Colcicine and ancillary medicine. Recently moved to Australia, Sydney. I am under the public health system ie Medicare. But dont known how to go about finding an expert doctor in this field. Just walk into any GP practice in the neighbourhood, explain to them the situation and hope they deal with it or refer to whomever they see fit? Is there any known specialist/hospital which I can try?
    Thanks.

  62. Franklin says:

    I also may have BD of a milder form all my life without realizing it until I got older and the symptoms seemed to get worse. I agree w/ Victor. You may want to try changing your entire diet to eliminate dairy and glutens. Starting w/ an elimination diet, I was able to control most of my symptoms unless I cheat. My primary doc didn’t know what I had when I complained of various symptoms which kept getting worse over time. It took a blood allergy test to reveal that my immune system was active and tested positive to many allergens including a list of foods. Ask your doctor about the link between food and controlling the symptoms of BD and make sure to do the elimination diet carefully so that all your nutritional needs are met under professional guidance. ASk your doctor about it though most doctors may not be familiar with this rare disease and its association w/ food allergies.

  63. Mandy says:

    Jessica, my name is Mandy and I live in Tennessee. I recently started seeing a physician in Chicago Illinois for Bechets treatment, however, I’m afraid I’m going to be let down once again. I’ve been battling Bechets and doctors since 2006 and the disease is rapidly progressing. I need help. Soon. Who is the doctor you are seeing? Thank you, in advance.

  64. Mindy Bruch says:

    Hi Leslie,
    My name is Mindy, I’m wife and a mom of 4 great kids ages 5 to 18! BUT- I have just been diagnosed with Behcet’s!! And I feel SO ALONE in fight. I have the most amazing husband and kids, but I still hold so much of my pain inside because there’s just no way they could understand the dail pain I’m feeling. I’m desperate for friend/friends who can understand what I’m going through. I’m SO thankful you had the courage to post your story!!! Thank you so much❤️ I have many of the same symptoms as you do, however I have been diagnosed with neurobehcets yet?? I was a competitive runner just 3 years ago placing 1st overall in my races, now my balance is so bad I’ve fallen over 3 times in the last 2 months (I’m only 38yrs old). It’s heart breaking! I’ve also had two spinal surgeries, which is what triggered my autoimmune symptoms two years ago. After my first surgery I could never heal completely, then I developed chronic fevers, and fatigue. Then came the abnormal blood counts and mouth ulcers, then vaginal ulcers, nose ulcers, ear ulcers, memory loss, spelling loss, nerve issues all over my body!! On and on… Finally after so many tests and and many differs specialists my Rhuemy diagnosed me with BD. It’s been so difficult for so many personal reasons. Will this ever get easier???

  65. Helmut Schroeder says:

    I live since 1987 with diagnosed BD. I control BD with a specific diet I have developed over the years and I take no drugs. I am very allergic to soy lecithin, which is in nearly every processed food. Eating food without soy lecithin is a good start to test yourself.

  66. Helmut Schroeder says:

    The 7 most common soy lecithin side effects. The most important side effect is that if we have a serious soy allergy, we should avoid all products which contain soy lecithin. Here are the main soy lecithin side effects to be aware of. 1) Gastrointestinal problems like diarrhea. 2) Change in weight (loss or gain). 3) Loss of appetite. 4) skin rashes and canker sours. 5) Nausea, dizziness, vomiting and confusion. 6) low blood pressure. 7) Blurred vision and occasional fainting. Some, if not all of those symptoms are the effects of BD. About one in 100 people have soy allergy.

  67. Sherri says:

    Oh Leslie, I am so sorry for what you’re going through, and everyone on here. My belated mother had throatfuls of ulcers and recurring vaginal ulcers. She never got a firm diagnosis. At age eight, I had my first “canker sore”. At 10, my first vaginal ulcer. Since then, I have had clusters of maybe six to eight ulcers at any given time, and about one vaginal flare-up per year. Lately, I believe I’ve started menopause, but won’t know for sure for a few more months. They say you have to go a full year without a period to know – but this year, I can say my symptoms have been the worst. I have been sicker than I’ve ever been. Two horrible colds with coughs, fevers, you name it, and recurring diarrhea, tummy pain, some vomiting, weakness, fatigue, incredible neck and head pain. All this, while fighting more mouth and vaginal outbreaks (going through both, right now). I’ve never been diagnosed with BD – had a negative skin prick in 2000, but have since never looked into it. But, seeing as how I’m now missing work, due to the sporadic symptoms, you bet I’ll be asking for an actual diagnosis! On the personal side, I’m 48, and have never “settled down”. I’ve dated a lot, but BD symptoms make you feel like a social pariah. You can’t kiss properly sometimes, let alone talk or do other things! And, in my job, as an advertising sales rep, I have to be “up” and talking to people in person every day. Not always easy. I carry all manner of mouth numbing agents, but haven’t struck on one that actual works for more than ten minutes. And, if I am in menopause, my BD symptoms are flaring up in other ways – arthritic hands, the aforementioned diarrhea, etc., body and neck pain, as mentioned, and over the past few weeks, I had two weekends where my eyes looked like I had bad cases of pink eye. Here’s hoping I get an actual diagnosis soon, so I know what I’m dealing with! Still, hearing these stories on here makes me grateful, because it sounds like I have a mild case, compared to some of you! My heart goes out to you all…Sherri

  68. Helmut Schroeder says:

    Dear Sherri, I live now for 27 years with diagnosed BD. My premise is that BD is a complex food allergy, aided by highly processed food. Ironically, the severe pain and discomfort BD is causing is making diet changes easier. The elimination diet plan is often used to find the foods that cause allergies, but BD is too complex to use this system. I use the “Walter Kempner MD rice diet.” Please study on the Internet his diet concept. I start with a white rice diet and some fruits and vegetables. After I have no more BD symptoms, I add more fruits and vegetables with some olive oil to my diet. I live like this for years a medication free and nearly BD free life. If you try this diet, please give me your feedback. I wish you good health!

  69. Helmut Schroeder says:

    Dear Leslie, my story of how I live with BD is ment for all readers and my thanks to you for creating this website to have this conversation. Let’s make this a positive exchange of ideas that look beyond medications. From my personal experience, BD is a malabsorption syndrome, coming from inherited genetic factors that will lead to those autoimmune disorders. Life comes with challenges and living with BD is our challenge.

  70. Leslie says:

    Thanks for trying to help, but BD is NOT a food allergy. To say that it can be “cured” is misleading! I fully agree and support eating to help decrease disease symptoms and in fact believe nutrition is a very important component in fighting BD, however it can be very dangerous to take your advice. Behcet’s is very complex and everyone who lives with it needs to have reputable, knowledgeable doctors to treat them. Food can either help or hinder ones disease and symptoms, but BD attacks us systemically and one has to be under the care of doctors who can provide a muti-faced approach. I believe in using both food and medical interventions to help us with BD. I do not believe food alone or eliminating certain things as you suggest is a cure nor treatment. Again, it would be irresponsible to give the advice you have to someone with this potentially deadly disease.

  71. Leslie says:

    Hi Mandy, I am just now seeing this and I would love to talk with you further to help! I am so sorry for all you have lost, it is very hard, but I must share with you that I am currently in remission even after all the near death experiences and horrible disease symptoms I have suffered with. So yes, there is hope and you should always remember that and cling onto it!! Never never give up!! I also have a support group for all women with behcet’s disease online and I would love to tell you more! I would love if you emailed me at lesliekeel32@gmail.com so we can talk further and I will do anything I can to help!! We are in this together and I truly understand all you are going through! Take care and hope to speak with you very soon!

    Xo

  72. Leslie says:

    Thanks so very much and I wanna do anything I can to help! Im so sorry to hear and I pray that you are getting along okay. Please say hi if you “see” me online anywhere and Im always available via email at

    lesliekeel32@gmail.com

    Take Care xo

  73. Leslie says:

    Hi Sherri,

    You too have and are going through a lot. I am so sorry and I would love to help if I can. Please email me at
    lesliekeel32@gmail.com
    I would truly like to speak with you further and be of any help I can! Keep on fighting!! Xo

  74. Helmut Schroeder says:

    I thank you for your reply. I did not write BD is curable; BD is caused by genetically inherited factors and cannot be changed. In 1987, my BD diagnosis came from a biopsy of ulcers in my throat. Physicians can diagnose BD, but they don’t know what causes BD. Their drug treatments are non-specific and don’t help me. I am allergic to the soy lecithin that is in most drugs. I work closely with my physician and they support me in my drug free diet approach. I live for 27 years medication free and healthy with dormant BD and that deserves credit. You debate about drugs like my doctor, are you a physician? If we have a meeting of our minds, I like to share my writings with you on how I live medication free with BD. if you try the diet, you can keep taking your drugs as long us you thing necessary.

  75. David says:

    Hi mr schroeder please could you forward your diet over too me please everything is worth a try. Ive just been diagnosed with behcets and feel if you have done without drugs for so long then so can i. My email is davethedad.dl@gmail.com cheers mate

  76. Merike Laigna says:

    Hi Leslie. I was diagnosed today with bechet. Its taken a year and half for doctors to figure out this rare disease. Many scared faces and comments: ive never in my 40 years of practice seen anything like “that”. I can tell after reading everything i can about this rare disease that i must have the moderate variety and hoping it will stay so..my entire mouth is like a giant leashion righr now…cheeks gums lips tongue. And lets not even start talikng about the genitals….lets just say its so raw its spotting blood while wiping after going to bathroom. It i so painful to talk and eat and piss.
    I know i will get better but its scary to know that it will return. My sons are so upset and asking if they are now” screwed”…if it in genes….do you know if your kids may get this condition as well? I didnt seem to find any answers online for this topic.
    Much appreciate your input

  77. Miranda says:

    Hello everyone,
    My name is Miranda. I really have no idea where to start or what to say or do. I am almost 24 years old, and about 4 months ago, I was diagnosed with BD. Like I said, I’m not sure where to go from here. I am completely overwhelmed. I’m not sure why im asking this, but if anyone has any information they can share with me about anything that I can/should do, please email me. I am desperate.

  78. Gabriela says:

    Thank you very much for sharing your experience. I am also diagnosed of BC before Christmas 2015. I have been suffering since 2010. Many of your symptoms I do experience as well. I have long experience list of different medications. Basic most of the time: Cortison (Prednison). I tried: Methotrexate, Imurek (Azathioprin), Colchicin, TNF blocker Infliximab (Remicade), Aprimilast (Otezla) and now Adalimumab (Humira). What drugs are you taking?
    I do wish you the very best for every new hour, less pain, less suffering, lots of positive views and happiness. Take care of you.
    Gabriela from Switzerland

  79. Mary E. A says:

    Hi, my name is Mary. I have BD. I have been living with this condition for probably 25+ years. I just turned 50 and realized after all these years my flare-up occur in or around my menstrual cycle, but not every time. There have been years between flareups, but most recently since Nov I have had severe flareups every time. I’m suspect it may have to do with menopause. Though I haven’t officially begun menopause it maybe sooner than expected. I have short bouts of memory loss (of course that may be due to age) more frequent. I’m currently taking colchicine for my BD. I have been taking it for many years. Keeps the flareups to a minimum. The mouth ulcers don’t last as long and the amount of ulcers are few. I have had years without flareups, however that doesn’t seen to be the case now. In November i had one of the worst flareups the ulcers were so large, that walking was very difficult. After my 800 ibuprofen no longer helped with the pain I was taking codine (pain killer) to get through the day. The sores took about a month to heal and a week later flared again (menstral time) . Though this was not as bad but an inconvenience and yet again on my 50th birthday. (See the pattern) I am seriously considering a hisorectomy in hopes that it may diminish flareups. Yes this disease sucks, I’ve had good times bad times and really really bad times. The important thing is that my family is aware of my condition and are very supportive and caring. My husband is an angel. He tries so hard to comfort me . It seems that lately it’s been more of a burden for him but he never says so. In return I’m trying not to let my condition slow me down or keep me in bed no matter how awful I feel. Keeping inflammation to a minimum is also important. Good diet and exercise seem to help. Over exertion increases the chance of flareups so take it easy. You may want to ask your doctor about colchicine is works well. Limit your sugar and bread they cause inflammation in your body. There is an ebook called inflammation 101. Good read. Lots of information. Good luck and stay positive I know it’s hard to I’ve been there, but life is good and it is what it is, so make the best of it.

    .

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  84. Helmut Schroeder says:

    Message to Miranda. BD is a chronic disease and drugs are not effective. Try the Dr. Kempner white rice diet with fruits and vegetables, like broccoli and asparagus. When you are free of BD signs, add carefully more vegetable to your diet. I control my BD like this for 29 years. You can email me for more info. Good health, H.S.

  85. Having a hysterectomy will not solve the flare ups. I was being treated for years with Genetal Herpes. Couldn’t understand how my husband at the time didn’t get it. After repeated flare ups and not responding to Herpes medicine . I suffered 1 month before they discovered it was behcet. My flare ups are now non stop and my doctor is hard to reach. I find reading on line to be helpful . Any suggestions pleased email .

  86. Izzy says:

    My wife was diagnosed of Behcet about a year ago. She has been in and out of the hospital for the past three years until last year the doctor’s told her that she has Behcet. She tried all the mentioned drugs in this blog or some others with no results until we (she and I) analyst the periods without pain and ulcer’s. This periods were usually after hospital visits. She took the same dosage of medicaments at home as well as in the hospital but, in hospital she reacted very position and came home with less ulcers and symptoms.
    We tried to understand what was the big different between hospital and home. Placebo effect came in mind but we were not convinced. The one major different between home and hospital is the automatically injection of anticoagulants during hospitalization. I understand Thromboses is also a part of this disease, but for some reason she reacts to this drug very positive. So, she start injecting herself at home with very good results. In addition there is a book about Behcet by Joanne Zeie in page 68 mentions about anticoagulants as part of treatment. By all means this is not a cure for this disease but it can reduce the ulcers drastically. She is now doing much better thanks to this anticoagulant injections which cost a friction of the other drugs, for more information please free to contact me at ismail_s@yahoo.com.

  87. Shauna says:

    Hi I also was diagnosed with bechets Back in 2015 . I see you took otezla . How was that for you and did you experience Any side affect from it . ?? I live in small part of Canada called Newfoundland and therefore their isn’t very many doctor here that know anything about this disease . I was just put on otezla about a month ago . I am also on a small dosage of prednisone .so far I been doing good with no out breaks of ulcers . But my body is in so much more pain my joists are really bad and the chest pain is unbearable. Just wondering if you had any of these symptoms . ?

  88. Shauna says:

    Sound great that would be very helpful. You can email directly.

  89. Abigail says:

    Hi! This post was SO very helpful. I’ve been in and out of hospitals for years with partial seizures and cysts and bleeding and other symptoms that seem to have no source. My brother was just diagnosed with Behcet’s and I have the gene associated with it. I’m between flare-ups right now, but I was wondering if anyone has a recommendation for doctors in the Virginia/West Virginia area. Thanks!!

  90. Ash Tunney says:

    Your attitude is awesome. I also was DX with a more severe version of Behçet’s disease in 2014. I would encourage everyone to look into dr. Yacizi who is based at NYU. He is the leading, if not only, expert in America. His father was also a leading Behçet’s expert. I traveled from OH to get a second opinion (even though I do have the genetic mutation) due to my other health DX including cancer, ectopic thymus, myasthenia gravis, and SEID… among other simple ones. I have done immense amount of medical research, and have helped a Few other Behçet’s patients by supplying specific articles tailored to them. If you would like any help or want to chat with a another young Behçet’s patient who is trying to make it through despite being disabled, home/bed ridden, and missing the social butterfly life, you can contact me any time at rare connect https://www.rareconnect.org/en/profile/Ashtunney or email me.

    Keep your head up and your heart strong. Best wishes

    https://www.rareconnect.org/en/profile/Ashtunney

  91. Jennifer says:

    feel free to email me anytime. I also too have been newly diagnosed with this

  92. Nana says:

    Jennifer,

    I’m sorry to contact you like this. I am currently a medical student in the U.S. working on a case report regarding Behcet’s disease. I was wondering if you would not mind sharing your story and picture of your symptoms for our publication, while everything is kept anonymous if need be.

    If you would like to discuss further, please email me at usagiya39@gmail.com

    Thank you very much for your consideration.

  93. Misty Reisor says:

    I have been going through this for almost 2 years. Been tested for every STD. All negative. My pcp thought it might be from my gastric bypass. Went to see my OB and she is the one who thinks I have this illness. The mouth ulcers and vaginal ulcers are so bad I can not even go to work.

  94. Leah says:

    Hi there. I am so glad I found you! All of you. Of course you all know the frustration we all go through when we are getting diagnosed, and that is what I am currently undergoing. I am being seen at Mayo Clinic in Rochester, MN. I have now seen a total of 9 physicians, and they have all come to the conclusion that I do not fit the “classic” symptoms of BD, but, really, what does that even mean?! But, fit enough that they are going to go with it and treat me for it. Here’s my story, and maybe you all, as the experts can tell me what you think… In May of 2015 I started with some strange symptoms. But as I think farther back, I may have been having some of the symptoms even longer. I am 44yo. The symptoms that stood out most were that I had pitted edema in both my legs. Since then and now every month (cyclical) as if I am having a period (had a hysterectomy way back) I start out with dry mouth and bad heart burn. Then I get a migraine, severe joint pain in my low back, flank pain, knee pain, pain in the joints in my hands, and ankle pain. Sometimes and now most times, so severe that I can barely get out of bed. I then get very painful ulcers all over the inside of mouth, tongue, and inside of my lips. The labs have come back negative for the herpes virus. I also get sores in my nose and on the outside of my nose and lower legs. I have not had any vaginal ulcers. Over the past year my eye sight and hearing have diminished substantially and my eyes burn and water but they are not red. During my flare ups, which last about 2 or so weeks, I am in horrible pain, and I have cognitive impairment where I have what I would call brain fog or zaps, short term memory loss, severe depression, I go days without sleeping, and have what doctors would call IBS with severe cramping and sometimes blood. It is ruining my life!there is so much more but those are the main points. Has anyone else had their flare ups so cyclical with their hormones? And does any of this sound familiar to your BD? I feel so alone!
    Thanks!

  95. Shane says:

    Hi my name is Shane i was diagnosed with bd in 2014. I thought i had a std and all tests were negative. After months of blood work and tests i was diagnosed with bd. I have most of the symptoms and in the past 2 years my life has done a 360 it tottaly stinks. I went from always on the move to forcing myself to take a shower. I have a good doctor at ecmc dr.neha dang in the organ tissue department she has me on colchricine and prednisone wich helps the severity but as time goes by the symptoms increase and it gets harder to function with every day tasks. My higher power and family give me the strength to carry on but somedays i feel like throwing the towel in. I recommend a good support system friends family exercise and good diet. To anyone that has this disease keep your head up and try to stay stress free. God bless you if you want to talk or need input or refferals you can reach me at sinnottshane62 @gmail.com.

  96. Kara Mckenna says:

    Hi. My name is Kara. I was diagnosed with Behcets a little over a year ago. My symptoms include mouth sores, leg/arm aches, rashes, neurological changes, dizziness, headaches, light sensitivity and complete exhaustion. I am on Colcrys and prednisone. I seem to have a flare when I get sick with something else or stress. I don’t feel like the doctors really know what to do for me. I’ve been to NYU last July where they said yes I have it and to try some different meds. I really don’t mind taking meds if I need them but what I would like is to find someone that has some different ideas. Or someone who actually takes the time to research for you, someone who cares. I find myself feeling hopeless at times and all alone in this. I feel guilty that I am not being the wife, mother and person I want to be.

  97. Seanna says:

    Shauna could you contact me via email? I am also from NL, and coincidentally a Shauna as well (spelled Seanna though lol). All my specialists think Behcet’s is my primary diagnosis and treating medically for that, but still querying other conditions. My email is seannamariemaher@hotmail.com .

  98. Erica S. says:

    Does anyone on here know of a specialist for BD in or near Arizona? I suspect I may have this disease but can’t find a doctor familiar with it. I have all the classic symptoms, including frequent mouth ulcers, sores in and around my eye and eye inflammation, migraine like headaches, joint pain, painful sores and rashes throughout my body, including my genital area, that have been misdiagnosed as shingles and herpes, all the blood work comes back negative. A friend told me about this disease when she was having painful sores throughout her body, but she did not end up with the disease. I need to find a doctor who is knowledgable in this disease near me to possibly get diagnosed and treated. Glad to have found this site. Thank you!

  99. Ajay Khemka says:

    I am suffering bd for the last 15 years .Around every 2_3 years this disease occur …My doctor prescribes colchin for 1 month and I am cured . this medicine colchin is very effective

  100. Jana says:

    Hi Guys,
    I’m Jana. I was diagnosed with BD in 2008 after experiencing the painful skin lesions (raised, hard, painful, dime sized) all over my legs, buttocks and lower back, genital ulcers and mouth ulcers. I suffered with this for a year on steroids before finding a rheumatologist who put me on 100mg of Imuran per day. It took 3 1/2 months to begin working, so be patient. But, it gave me my life back!! It’s a miracle drug, truly! I’ve been on it since 2009 with no significant flares at all!! Only flares I’ve had was when they dropped my dosage to see if I could get off of it. I lead a normal, pain free life! There is HOPE!! Hang in there!

  101. Lillie Martinez says:

    Hello, my name is Lillie
    I was diagnosed with bd 1 1/2 years ago. I have four children two that I gave birth to and two that I adopted. This illness has totally taken my life. I spend most of my time at the doctors office and hospitals then I do with my children. Two of my children is taking my illness real hard and it’s really interfering with there every day happiness. So I try my hardest to push myself to the limits and go out and do things with them like I use to do, but I end up pushing myself to much and end up in the hospital. Dose anyone have any advice on what to do with this illness and kids? How to balance it out?

  102. Gilly says:

    Hi Mary
    I was interested in reading your message because I too have been suffering from BD unbeknown to me until very recently, I have been going back and forth for years and years and then finally after being diagnosed with JHS I asked what about the ulcers to the rheumatologist and he simply said it was not associated with JHS, nobody wanted to take ownership of these ulcers. No idea why but a few years have gone by and I decided to do some research of my own and found out about BD was shocked with what I read, I was reading about things that have affected my for decades. I decided to take my new found information back to a new Doctor who simply said that’s a rare condition and didn’t think I could have it because my eyes are not affected… so I asked how much she knew about the condition and it turns out very little so then asked what is it that I have got… it could be something else she says, please tell me more I said… nothing but silence so I asked to be referred and 4 months later I saw another rheumatologist who understands the condition and had no doubt in diagnosing me.

    I do not suffer in my opinion like many other people with BD who suffer horrendously, I have flare ups sometimes a couple of months apart and other times it has been over a year, I have recorded much of my symptoms over the years which has helped the rheumatologist with my diagnosis, I think possibly like Mary, as I am in my 50’s too, and late to diagnosis that I have learnt to try and cope with the symptoms I have simply because nobody seemed to know what it was, I can sense the starting of the ulcers after all these years of self help and act upon them immediately, with occasional visit to the Doctor for medication to try and deal with the larger ulcers if I have not been successful in nipping them in the bud. The rheumatologist wants me to try colchricine on an experimental basis as well as continue with my charting of my symptoms and then she will review me again.

    The rheumatologist and I were discussing tonsillitis because I have been having this all my life right up until I had them taken out in 2014, I had been reading about some association with Tonsillitis and BD, has anyone else linked themselves with this too?

    I would like to know does anyone take health supplements that can be helpful and is there anything I should be avoiding or trying to ease the joint pain, muzzy head and tiredness. Thanks for reading Gilly in the UK

  103. Stephanie says:

    I was diagnosed with Behçet’s August 2017. I had been going to my primary care, urgent care and ER constantly for years before I finally got a diagnosis. I feel so alone and no one in my life truly understands what I’m going through everyday of my life. I feel sad when I remember the person I used to be and when I think of the person that I am becoming. I feel guilt for my husband and 2 beautiful daughters because they deserve the wife and mother I used to be…. thank you for this post because it is inspiring to see that we are not alone.

  104. Tiffany Nash says:

    I was diagnose with bechet disease May 2015 and I guess I can say I’m so selfish and in denial because I haven’t been taken my medicinie at all. I feel so alone I feel like it will go away. I need help right now I’m depressed and stress please help

  105. Ann G. says:

    I was diagnosed with Bechets Disease in 2008 by a general doctor. I retired in 2007 at 55 because I stayed sick more than not. I would have the flu and it would take me a month to get my energy back. Then the awful bumps in my armpits and other places that were awful. Once I retired and any trips we planned ended up with a bout of the blisters. The least little stress would put me into a mess with the blisters and not knowing what to do. Finally I was home when I had a breakout, went to my local doctor and after about 30 mins he came in with a handful of printed out paperwork and said, I think you have Bechets…..????? Never heard of it but he insisted a read and make an appt with a rheumatologist. I did and since there is not a test really for it we went by my history and symptoms and she started me on cyclosporine 50mg twice a day. It took about 3 months to get in my system but I have been clear for the past 5-6 years. I can feel it coming on in my mouth and keep a script of predizone to calm it down. You really have to pay attention to your body and try to learn what triggers it. Stress is probably my biggest trigger. I have to slow down and take it easy now. I need more sleep and some things I eat will cause my face to break out which takes forever to heal. I have routine blood work to make sure my liver and kidneys are ok. I have rheumatoid arthritis also. Most of the medicine to treat the pain and stiffness of my arthritis, I can’t take so I use biofreeze on my joints when I need too. It is not easy and there is no way I could hold out to do my job I retired from. I do have some stiffness in my neck and some memory problems I think are associated with this but I have a great family and I make a effort to take care of myself and work with my doctor. For me, so far I can manage it..not sure what the future holds but I will continue maintain a lifestyle that keeps me healthy.

  106. Hello! I was diagnosed in September of 2017 with Behcet’s syndrome by an Internist and rheumatologist who already had 2 patients that have this syndrome. My symptoms started last Fall, so it took a year to find a doctor who knew what was wrong. My symptoms began with swelling in my knees and mouth lesions. I went from working out every day to being in bed for days. Having 2 kids to take care of and household made it difficult. As my husband often says he was a single parent. Between orthopedic surgeons and rheumatologist that had me on steroids and chemo and multiple aspirations from both knees, tests for Lyme nothing worked. Steroids helped temporarily but symptoms would return within 2 yo 3 weeks. My friend recommended a doctor who agreed to see my case. Primary doctor gave me referral to John Hopkins and was hopeful that they would figure out what’s wrong. This doctor saved me, Dr. Zarbalian is one of the few doctors that spent 2 hrs with me and my husband going through mountain of tests results and MRI. He ordered thorough test for Lyme, to be 100% sure, but added that he was very confident I don’t have it. He was right, test came back negative. He prescribed me colchicine and Plaquenil which is anti inflammatory. Doctor advised that my symptoms are mild to moderate, he also said keeping my dairy free and gluten free diet, since Syndrome does cause flares if dairy and gluten are present in my system. Apparently, our ethnicity has to do a lot with Behcet’s. I did a DNA test, Doctor said Syndrome occurs in Armenians, Iranians, Greeks, Turkish and other Middle Eastern countries. I always knew my family was 100% Armenian, well test came back and to my surprise, I have Greek/Italian, Middle Eastern and the rest Armenian. The only side that does not have Behcet’s is Italian side. I am glad to have found this blog. My life was turned upside down, at 34 years old I felt 80 and that my life will never be the same. I am grateful to have an amazing family and friends that supported me, and a doctor who listened to me and was able to help. Without them I would not have made it through. To all of you who posted on this blog, stay strong, have faith and let your friends and family to support you.

  107. Chet says:

    I found out that I likely have BD yesterday. I have had horrible mouth ulcers for over a month. The only way I can eat is by numbing my mouth with a prescription Lidocane mouthwash rinse first. I have a really big ulcer at the bottom of my inside front lip and the doctor saw a huge one at the back of my throat My tongue is ultra sensitive and it hurts to just move it. There are only a couple foods I can eat without pain like yogurt and eggs. Drinking isn’t much better.

    About three months ago, I had a genital sore (just one) that I thought was herpes (I’ve had genital herpes outbreaks twice before in my life). I treated it like herpes (with acyclovir) for over a month and it never got better, not typical for my herpes outbreaks in the past. It finally healed but now I have a scar in a place a guy would least like to have one.
    In hindsight, I think it was the BD, not herpes.

    For a long time I’ve been waking up with joint pain so bad I would feel like I’m 90 (I’m 58), then I’d be better the next day. I just wrote it off to getting older but it was weird how fast it would come and go.

    After suffering with the mouth ulcers for three weeks, I went to urgent care, they thought I had hand, foot and mouth disease. Said I’d be better in a week. Wrong.

    Then saw my doctor a week later who was puzzled and put me on a course of prednisone for five days along with Valacylicovar (sp?) in case it was some other strain of herpes, and he ran a bunch of labs. By day five, my mouth was better but as soon as I stopped the prednisone, the painful mouth returned.

    So then I saw him yesterday and that was when he said BD could be a possibility. So I’m on prednisone again for nine days this time. He is reluctant to keep me on prednisone long term because of the other issues it can bring on and my labs are always messed up … high creatinine (sp?), and slightly elevated liver enzymes (I take too many meds).

    Interestingly, I’ve suffered from gout for about two years and have been taking colchricine twice a day to keep the flare ups away and then I had a bad flair up three weeks ago, affected my left wrist too. I bumped up my colchricine to three times a day and it got better. When I told the doctor about it a week ago, he put me on Aluprinol (sp?) instead because I guess colchricine can be hard on kidneys, but now that PD is suspect, I’m back on the colchricine and he’s going to keep a close eye on my kidney values.

    While I’m searching for whatever will work I have a life I have to live and support myself so I need to find someone good who can help me get a hold on this soon. Is it a rheumatologist I should seek out? Or a gastroenterologist or dermatologist?

    I live in the San Francisco east bay in case anyone knows of a doctor who specializes in BD in my area. I’ve been getting depressed out of my mind from the constant mouth pain for so long, and it feels like it’s been months since I actually felt good without a headache, joint pain, fatigue and for the last month and a half this awful mouth pain … I’m petrified I’ll get another genital sore, I think I’d rather have the mouth pain than go thru that again.

  108. Karen Dynna says:

    Chet, start most importantly with a rheumatologist who assesses,investigates & formulates a care plan. With BD you will be referred to an Opthamalogist d/t the risks to your eyes .I was diagnosed in 2013.
    I had my mouth sores biopsies by an oral pathologist, and have seen a neurologist due to L’Hermitte Sign a symptom that can occur with BD..
    Kind Regards,M

  109. Jameisha says:

    Well I was just diagnosed BD in October 2017… but in August of 2017 is when it all started & no one here in Texas had heard o it.. so, as I was in & out of ER’s being mid-diagnosed, my ulcers in my mouth & throat was only getting worse. So, finally when one of the many hospitals kept me (for 3 long weeks), they got me a rheumatologist & he diagnosed me with Behcet. When I was released I was told that this would go in remission within 2-3 was. It is now February 2018 and I’m still screwed.
    I’ve been struggling getting passed the pain in my mouth & my arthritis flaring up in my right knee. It’s been swollen now for a month. I have gotten vericose veins in my arms & legs. My hips and right upper leg have cramped all day, even with my pain killers.
    My life has changed drastically, I can’t work anymore due to very bad back pains and neck stiffness. I’m trying to cope with this, but, have gotten very depressed on top of my othe depressions.
    Well enough of my venting. Just know that life goes on one way or the other. Don’t give up or give in. Take it one day at a time and learn coping skills, you’ll need it.

  110. I’m a 25 year old mother and I have been diagnosed with BD ever since I was 6 years old where I would get painful ulcers in my mouth or vaginal area, up to 10 in my mouth and the most of three quarter sized ulcers in my vaginal area, which makes it so hard to walk it becomes unbearable. For nearly a decade I had to go through lots of doctors and they would all terrify me by saying what I had was HIV until finally a REAL professional said if it was HIV my ulcers wouldn’t burn. Still have yet to recieve help from anyone I’ve come across other than small tubes of goo they give me to numb them. I heard about medication to help with the flare ups but it seems nobody cares to recognize its so painful to even take care of my kids, ages 1 and 4. I’m just grateful they did blood work on my kids and they don’t have BD. But, I can’t even get a job with this and have no idea is SS will accept this as a disability or not, for the longest I get these ulcers can be from 2 weeks to 2 whole months.

  111. Ana Cheyanne M says:

    I know how this feels entirely… I read this article and started crying because I relate to it all. I have behcets disease in a SEVERE form as well. I was told it was unusual and so many dr’s don’t know enough about it they think that it only causes ulcers and joint pain they aren’t aware of the nuerological damage that mimicks MS, the damage to the organs and vessels surrounding them and it almost killed me. My heart got affected recently I had a seizure due to lack of oxygen because my heart was beating so fast it would stop for a moment leaving me without oxygen then restart. I was admitted to the hospital then referred to a cardiologist after they got it under control. THANKFULLY this Dr knew about Behcets and that’s when I learned the ugly truth what it can do and what it is doing to my body. I have had it my entire life and wasn’t diagnosed till I was 19. I dealt with the “It must be all in your head” or the “I know something is wrong with you but I dont know what” and the “Well maybe if you exercised more eat better sleep more you will feel better” and finally “PRAY PRAY PRAY god will heal you” when all those options were not doing it I had had enough and so had my mother who stood by me through it all. I had ulcers in my eyes, mouth, genitals and at first my Gyno thought I had herpes because of the way it looked well the tests were done and it was not herpes. So she sent me to a rheumatologist outside of my city and by this point I had given up on dr’s I had ENOUGH of it all. I just wanted to curl up in a ball and stop doing anything because it all became so painful and pointless (I used to be a cheerleader, I iceskated, rollerbladed i was VERY active before it really set in and started down the path that CHANGED MY LIFE FOREVER) well the dr who diagnosed me was about to retire but he vowed he wouldn’t leave until he diagnosed me so he got ROI’s for my other doctors and he diagnosed me within a month but it wasn’t enough to have a diagnosis I had to prove it to my insurance to get the medicine that I needed (which ended up being a waste of time since I’m allergic to most of them or they just plain didn’t work) and so the long process of being a lab rat started until we had a firm set in stone diagnosis of behcets. At this point I was 19 I was seriously sick of life and was ready to just say f*** it (excuse my language but if you’re dealing with severe behcets you know what I’m feeling and god I feel for you NO ONE DESERVES THIS). I told this dr that he was my last hope that I had come in there with suicide on my mind because the flare ups were horrible I had vasculitis really bad and I couldn’t go out I couldn’t have a relationship I barely got out of bed because it was hurting my joints SO badly I wanted to scream. Well unfortunately he retired before we could continue finding a new regimin of medicine. Since then its been a battle to find a rhuematologist that knows ALL of the aspects of behcets and understands it is DEADLY in some cases which I have all of the symptoms, the GI tract problems including GI ulcers, mouth genital and eye ulcers, Lesions on the brain, SEVERE joint pain, Crippling migraines, I lose the ability to see when blood flow isn’t functioning. Then I’m sure there’s more I’m forgetting I just am happy in a bittersweet kinda way to see I’m NOT ALONE. I feel like I am sometimes because your family and friends try so hard to understand but they can’t they think they do but you can’t possibly expect them to understand what it feels like when your body turns into a prison and its the warden as well as the executioner when it feels like it. I feel like its never gonna end and that the drs cant find a medicine that helps and pain management is SOOOO hard to find now days because of the people who abuse medicine. I dont know what to do.

  112. Curtis says:

    I’ve been fighting bechets for about 13 yrs now, it’s a struggle everyday. I go to bed every night not knowing what’s in store for me the next day. I’ve been taking prednisone for 10+ years, yes you heard me right 10 +. It seems to be the only medicine that helps me. And as soon as I stop taking it I have terrible flare ups or my body just goes into withdrawal from not having it. I just recently started a new medicine the Dr’s want me to try and ween me off the prednisone at the same time. Hopefully this works because this is all getting very old and very frustrating. I was always an active person, I played football in high School I work in the construction business which isn’t easy on the body. Now I find it challenging walking my dogs around the block. If there is anyone out there with any helpful tips or different treatments that worked for them please share.

  113. Joelyn Cada says:

    Hi! I’m 41 and was finally diagnosed with Behçet’s recently after a lifetime of issues. My childhood pediatrician always said I liked to keep her in business. I suffered from severe Ear infections from birth until age 7 when they removed my adenoids and tonsils which where growing length wise not width wise down my throat suffocating me at night when I slept. My mom said I would stop breathing for up to 30 seconds! I was always trim never over or under weight. However I have the ankles of an elephant. I have topical scleroderma on my left arm. All my skin scars very dark. I too suffer from Reynauds. I hate the cold. It literally hurts. I take magnesium and a cocktail of other vitamins to help with my skin and nerves including Hemp oil. I still have teen age like acne in my 40’s! My mouth is pretty chronic with ulcers all the time that I take antibiotics to clear up. Usually Macrobid works best. I DO NOT suffer from vaginal blisters at all thank god! I can’t imagine how awful that would feel as it hurts bad enough after a shaving nick. I’m not sure about my heart, brain, or lungs yet as those appointments are to follow. I do get fungal infections on my feet often. And these are all just my life long issues that have stumped them. I recently discovered I had BD because of the severe pain I’ve been experiencing in my neck, shoulder, arm, and hip. All down my left side pretty much. At 1st it was like Oh you have a herniated disc. Then it was like Wo! You have a lot of herniated discs! Then they were like plus Osteoarthritus… and then they were like Sacral Iliac Disfinction… and after that we were like but why? I’m so young! These are old lady issues! Once I started complaining about my mouth sores my doc was like AHA! Behçet’s! So now High hoe I go off to the Immunologist! I also suffer from a lot of broken veins in my thin healthish legs that are puzzling so I’m off to a vein Dr also… and a heart doctor 🙁 All’s I know is just 1 mg of prednisone a day made me feel like a million bucks again but they won’t let me have it because it’s too dangerous 🙁 Is there anything on the Natural market similar? Would Sam E be a safe alternative? They both prime the adrenal gland!?! Right? How about acupuncture? Could that help?

  114. Ferri says:

    Hi I was recently officially diagnosed with BD. I started by being pregnant 7 yrs ago, catching parvovirus that symptoms never seemed to go away; so Rheumatologist got involved they called it a lupus-like disorder. Bouts of arthralgia when I’m stressed etc. it is happening more and more until 4 yrs ago I lost 37 lbs doing paleo the inflammation and pain went away; I have gained the weight back and it’s difficult to not eat all those things but the pain in my lower back and hip is unbearable…. I have to stick to the diet because I see a correlation between my elevated A1C levels and my pain.

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