Parts of this are hard to share because they are so personal, but I’m so frustrated with the whole situation I feel this story needs to be shared. So be warned, personal information ahead….
First some information about the disease from http://www.behcets.com.
Behcet’s Disease, also known as Behcet’s syndrome, is a rare, chronic, autoinflammatory disorder of unknown origin. Its manifestations are thought to be caused by vasculitis resulting in damage to blood vessels throughout the body.
Current research suggests viral, bacterial, genetic and environmental factors may play a role in the development of Behcet’s Disease, but no specific cause has been established and no triggers have been identified. Epidemiological studies suggest there are approximately 16,000-20,000 cases of Behcet’s Disease in the United States (approximately 1 case out of every 170,000 individuals). Behcet’s is considered a rare disease in the United States because it affects less than 200,000 people.
Behcet’s Disease is NOT contagious, therefore, it does not spread from one person to another. Symptoms vary from person to person. The most common symptoms include oral ulcers, genital ulcers, inflammation of the eye, skin lesions, and arthritis. Inflammation inside of the eye (anterior or posterior uveitis, retinitis, and iritis) may be serious and lead to loss of vision if untreated. A complete eye exams should be part of the assessment if ocular manifestations are present. Other symptoms of the disease may include blood clots, inflammation in the central nervous system, symptoms of the digestive tract, and rarely, involvement of the kidneys.
Treatment of Behcet’s Disease is symptomatic. It is aimed at reducing symptoms and preventing complications. Prognosis varies based on the organ systems involved.
In June of 2015 after spending a few days at the lake I noticed sores on my genitals. I had forgotten my Summer’s Eve wash at my house so I decided to go to the closest store and buy some more. The kind I bought was the same brand just a different scent. The sores looked like ulcers not bumps or itchy spots, but they hurt so bad I could barely walk. They were two located right next to each other so every time I moved they rubbed together. A few days later they were gone and I chalked the whole issue up to my sensitive skin and the new scented wash.
In December of 2015, the sores came back a week before my very first trip to Disney world which was a gift from my boyfriend. I was in so much pain, I actually considered staying home and wasting his money. After talking to my mother, she convinced me to go to the gynecologist and keep my vacation plans. As soon as my gynecologist looked at the sores she said, “Yep! That’s herpes!” With no compassion. I jumped out of my skin. I have only had sex with two people in my life. Now I am not naive, I know you can get herpes even if only having sex with two people, but it felt so unfair that this could happen to someone who was so careful. I asked if she was sure and she again told me I had herpes, but she would take a culture of both “sores.” The culture basically felt like a plastic brush that they scraped skin off of both sores and then they tested it for herpes. I was told this is the most effective way to recognize herpes. I told her, that I had done research and I looked up sores and the herpes sore I saw pictures of looked different than the sores I had. The “sores” I had looked just like ulcers you get in your mouth. She never acknowledged the fact that it could be anything but herpes. On my way out of the doctor’s office I cried my eyes out. How could this happen to me? I was just in shock. I then made an ass out of myself to my boyfriend. She prescribed some medicine which I don’t remember the name of to treat herpes and a huge tub of lidocaine to numb my sores while at Disney just well enough so I could walk. During my trip to Disney I was desperately reliant on my tub of lidocaine so much so that it stayed in my backpack and I had to reapply it throughout the day to make walking less miserable. I did not let being on vacation stop me from looking into my illness myself. If the doctors were not going to be open minded enough to look into other things I would have to be. One night googling “herpes misdiagnosis” I came across a lady’s story. She had Behçet’s disease yet she was treated for herpes for twenty years before finding out that in fact it was Behcet’s the whole time! Twenty years of untreated Bechet’s disease did a huge toll on her nerves and she was unable to walk. I would not let this happen to me. I saw that plenty of symptoms I had lined up with Behcet’s, but I’ve always been paranoid and assumed I was overreacting. Two excruciating weeks after the doctor’s appointment and also while on my vacation, I got a call from the doctor. The results came back negative! But instead of the nurse being happy for me, she said “But it is probably herpes.” What?! I got very angry with her. “She told me that is the most effective way of determining whether or not it is herpes and it came back negative but yet you’re telling me I still have it?!” So I brought up to Behcet’s disease and how many people are misdiagnosed with herpes. I will never forget what this idiot told me. “That disease is way too rare, there is no way you have it.” Furiously, I called my doctor a few days later. I talked to the lady at the front desk and she assured me that Jackie, the nurse, would call me back. I guess all the other nurses there had their feel of me because every time I call I get the same monotone, “What’s your number and Jackie will call you back.” Those nurses could tell you a few stories about me! Jackie called me back and said the same thing, “Behcet’s is very rare, I doubt that’s it.” I told Jackie to have my doctor call me back.. A few more days later, same exact answer from my doctor over the phone. “It is just too rare.” Just let that sink in.
FYI if you asked anyone who was on that Disney trip about this they would have no idea all of this happened (until now 😆) because I was so overwhelmed by the whole situation. I also did not want to ruin an amazing experience for everyone else by constantly reminding everyone I was in terrible pain. So I silently dealt with being humiliated of being tested for and the idea of having herpes, calls from my doctor, pain every time I move, and desperately reapplying lidocaine. But let me just say through it all, I still had an amazing time. The first time I noticed the numbing in my hands, legs, and feet was also on this vacation (eventful, I know!) I just assumed that maybe it was due to all the walking and out of an effort to not complain about being in pain the whole trip I decided to keep this information to myself.
Fast forward to February 2016, I have experienced numbness here and there, but I didn’t think it was anything big. I gave up on the fact I had Bechet’s and assumed it was just a freak incident. Then before I knew it, the sores were back. I had such an awful experience at the gynecologist the first time I decided to deal with the ulcers myself this time with my huge tub of lidocaine and pray they go away fast. The ulcers were more painful and larger than usual. I also felt like they lasted longer. This didn’t concern me though. In March is when the numbness became more prominent. I would tell my mom or boyfriend about it every now and then, but I would laugh it off and say, “My body just hates me!”
By May, I decided I had enough between how painful the sores were in February and the constant numbness and pain, I was ready to get answers. While doing some research I found a story of a lady who was diagnosed with Bechet’s because of a bad reaction to a TB test. I felt like I got hit by a truck!
Back in October of 2015, I started my job at a local day care. When working in child care, you have to get a TB test and guess who had an AWFUL reaction. As soon as she put the bubble under the skin of my arm, tons of tiny red dots appeared on both arms. The nurse at the doc n’ a box place I was at panicked, “Does this happen often?” “Uh..No. This never happens.” After a parade of different nurses and doctors coming in and out of the room, they decided I should stay until the dots went away. Not even an hour I was told.. I missed work that day! I was at the doctor for three and a half hours watching tv and drinking juice boxes. After reading her story, I just knew I’ve had Behçet’s for a long time and I always made excuses for my symptoms instead of acknowledging them.
On June 9, 2016 I had THE doctor’s appointment. The appointment when I was going to lay all my symptoms out and tell my doctor exactly what I thought I had. First I talked to a nurse practitioner, who I kept telling, “I know all this sounds crazy, but I really do experience all these symptoms.” She was very sweet, but also thrown off by my very over the top and demanding personality I am forced to have while at the doctor because all doctors have made me feel unheard and unimportant at one point or another (little did I know that feeling was about to get worse). Then my doctor came in. I went over the list of symptoms and she said, “This all sounds very familiar. Hold on a second.” She rushed out of the room. I didn’t want to mention Behçet’s right away, I wanted her to figure it out, because hell, I am not a doctor maybe I am crazy and that’s not it. I could hear her furiously typing at a station right outside my room. She called the nurse practitioner over, “Look this is it. I think this is what she has.” She came back in and said, “Okay, I think you have Behcet’s disease (mispronouncing it) but the good news is you aren’t going to die. It is treatable.” I tell her about my numbness and again she says, “Hold on.” Next, I’m not sure what happened or what exactly she was talking about but trust me it was terrifying to hear. She again yells to the nurse practitioner to come here and says, “Look these levels have been elevated for over a year. Wow. We have got to get her to Dr. Perkins ASAP. Jackie! Call Dr.(not mentioning names) and send Kelsey’s forms over.” She enters again and says, “Now I know you hate getting stuck, but there are some tests we can do to check for Behcet’s.” I interrupted her. I told her I did my research. I knew that’s what it was for a while now. I told her I talked to her, her nurse, Jackie, and my gynecologist and everyone told me it was too rare. Then I told her that I had a reaction to a TB test before… “Oh well that was the test I was about to do. We were going to see if you had a reaction. Since that test was less than a year ago, I guess I don’t need to do it again.”
As I walked out tons of information was thrown at me. “A dermatologist is going to be calling you. A rheumatologist is going to call you. There is a specialist I’m going to recommend. Then you’ll need to come back here. They’ll be lots of test!”
June 22, 2016– I have no new information and no new doctor’s appointments. One doctor has called me, the dermatologist, and they told me that they’ve never worked with Behcet’s before so they can’t see me unless I have a flare up. Numbness is happening everyday, multiple times a day. I have called my doctor three times and even Jackie won’t call me back. I called again today and no one called me back or gave me any information.
June 27– My doctor’s nurses still have not sent all the information needed to refer me to the rheumatologist. This is the fourth time I’ve called and spoken to someone about this issue.
July 2– Finally, the rheumatologist have received all of my information needed. I was told she needed a few days to review all the information about myself and Behcet’s before we could schedule an appointment. Also, two ulcers have appeared in my mouth. One on my upper lip in an area I couldn’t have bitten and one on the roof of my mouth.
July 5– Two genital ulcers have appeared in the usual place. Less painful this time and also two days after visiting the lake like the very first time I noticed the ulcers. The two ulcers in my mouth are still there. I have called my doctor and the dermatologist. Tomorrow I have an appointment to get biopsies of some or all of my ulcers.
My days are spent waiting on doctors to call that probably never will and a flare up to happen so maybe just maybe my dermatologist can treat them. To say I am frustrated is an understatement. How can you tell someone they have a disease and give them no new information in the next month? I was told to give these doctors a few days to do research on Behcet’s and then I would get calls. Maybe I am being impatient or maybe these doctors have no sympathy for what it’s like to have questions about your own health that no one seems to be able to answer.
Talking to people in a Behcet’s chat, many people recommend going to the specialist, Dr. Yusuf Yazici, in New York because so few doctors have successfully treated Behcet’s. Hopefully I can get some doctors in Alabama to actually call me back, but if not watch out Dr. Yusuf Yazici because I’m coming your way.
I would just like to tell you, listen to your body. Healthy people don’t have crazy aches, pains, and numbness. If you think there is something wrong, then there probably is and don’t listen to doctor’s telling you otherwise. You know your body better than anyone else.
The same goes for life in general. If in your heart you feel one way and everyone is telling you something else, don’t listen! You know you better than anyone! Don’t give up even when that’s all you want to do. I ask that you pray I get answers soon. Thank you for reading my story. I hope this raises awareness for Behcet’s and encourages people to never give up.
“We often suffer, but we are never crushed. Even when we don’t know what to do, we never give up.” 2 Corinthians 4:8