So, I’m likely going to vlog at some point, but for now I’m going with blogging. For starters, it’s easier to search when people are looking for information. Secondly, I don’t have to put on makeup to write in a blog. Vlogging will require at least some foundation!
My journey to diagnosis was long, but that’s common with Behcet’s, especially if you’re an atypical patient. I’m a caucasian female, with no Asian or Middle Eastern ancestry. I have a strong family history of autoimmune disorders, but my when my symptoms began to disrupt my life, all my blood work was normal. I’d dealt with severe canker sores as a child, I’m talking several at a time, so big they would cover my entire out, but my family just shrugged it off. I was one of those kids. Salt water and spit, and move on with your day. As a teenager my balance began to get funny, but I was tall and gangly, so we chalked that up to klutziness.
At age 20 I went through a traumatic experience that left me with PTSD. It was frustrating because I’d been dealing with physical symptoms around this time, too. I had fatigue, joint pain, and severe abdominal pain, nausea, and diarrhea. I lost a ton of weight, was sleeping 17 hours a day, and couldn’t get doctors to take me seriously. Most wanted to chalk everything up to PTSD, and leave it at that. Finally a gastroenterologist looked into my gallbladder, and realized I was almost in gallbladder failure. This was after a prior gastroenterologist had labeled me anorexic and bulimic! Surgery eased some of my abdominal symptoms, but not all of them. It did give me the drive to seek answers. I was 21-years-old, too young to be as sick as I was.
I started at rheumatology because of my family history. My father and aunt both have lupus, and other autoimmune disorders plague the paternal side of my lineage. My mother is adopted, so we don’t really know what I could have inherited from her side, however, she’s barely 5 feet tall, and blonde, so the chances she’s asian or middle eastern are pretty much zero. My rheumatologist saw my family history and announced he was sure it would be lupus, but to his surprise, my blood work was normal. Over the next few years I was poked and prodded, and each time the doctors were frustrated. My rheumatoid factor did come up positive, but just barely. Not high enough to diagnose me with rheumatoid arthritis, and my ANA was consistently negative. The first rheumatologist had put me on plaquenil, which seemed to help with the fatigue and joint pain. I didn’t feel normal, but I wasn’t feeling like cold death either.
I moved across the country, and the new rheumatologist felt that lupus made the most sense, too, but he couldn’t diagnose me with the condition. I simply didn’t meet the diagnostic criteria. He was aggravated, and reluctantly labeled me as having a “lupus like syndrome,” or “mixed connective tissue disorder.” It was the IBS of rheumatological diseases. If you have IBS, you know you have it, and it sucks, but if you have something that seems more severe, and they can’t sort it out, they slap you with the IBS label and wait for things to worsen.
For me, things did get worse. I’d had periodic seizures, which I was briefly medicated then unmedicated for. I gave up alcohol, and was careful to get enough sleep. My balance worsened and neurology nonchalantly announced they felt I had multiple sclerosis, or a degenerative ataxia. I had six months to show improvement once they ruled out MS, if I didn’t improve and things actually worsened, they were going to push for testing for the rare ataxia. The test would cost me almost a thousand dollars, and there was no treatment. I’d basically find out whether or not I was dying, and be given the time to prepare for the inevitable.
While all of this was going on, I was also having dental issues, migraines, and GI bleeding. I kept feeling like it all should be related, minus the dental issues, but of course I couldn’t find one thing that covered all my symptoms. I’d watched a show years earlier about a woman who spent years waiting to be diagnosed with something and nearly went blind before discovering she had Behcet’s. I dismissed the disorder because I had no eye involvement. Sure, I had some days were I was severely sensitive to light, so much so I couldn’t even open my bloodshot eyes, but all my eye exams were normal.
Finally, just after turning 28, my dentist of all people, got fed up with my situation. I needed extensive root planning done, and he simply couldn’t do the work because of the number and frequency of canker sores I was getting. He told me the sores were ulcers, worse than the canker sores he was used to seeing, and that the frequency and number I was getting at a single time, concerned him. He suggested I see an oral pathologist, but the doctor had a long waiting list. The second option, was to go to my rheumatologist to see what they thought about the situation.
I thought he was insane. Why would my rheumatologist care about my mouth? As I sat in the office, I thought about ways to apologize for wasting his time. He sat down and I explained that I was doing okay, but that a couple weeks earlier I’d had more canker sores than I could count. We started talking about other issues I’d had, including bruising, and skin lesions on my face that had appeared to be acne-like, but weren’t acne. The spots had confused my dermatologist, who had then been relieved when they healed courtesy of steroids without leaving a scar.
“I know what you have.” He was delighted. His face was like a kid on Christmas who just got exactly what the wanted. I was shocked when he told me it was Behcet’s. He asked about my response to having my skin pricked for blood draws, an while I never had an issue, I did react violently to allergy testing. In fact, they thought I was allergic to the needle itself until they realized I was just hypersensitive to being stuck. That’s when I learned my allergy testing had amounted to a positive pathergy test. The raised bumps had lasted for weeks.
Getting the diagnosis was bittersweet. I wasn’t crazy, but I had something rare. Really rare. All my medications would be obtained off label, which meant insurance battles for coverage. I would need to see a host of specialists because the rheumatologist may handle my main medication, but GI issues, neurology issues, and all the other issues that occur as a result of having the disorder, have to be managed by the appropriate specialist. Each time I see a new specialist I cringe. Some are excited to have a patient with a rare condition, while others would much rather stick to the predictable. The worst scenarios I find myself in, are when I’m up against a disbeliever.
“You know that’s really rare right? Who said you have it?” The judgment questions. As if I didn’t spend seven years trying to sort out what the hell was wrong with me. I run down the list of symptoms, followed by my family history of autoimmune diseases, and just hope that the doctor I’m dealing with can handle it. If not, it’s on to the next one. The ER doctors are often the worst. They still cling to the PTSD diagnosis as the culprit for so much. I’ve had a few abnormal lab results since then, but nothing high enough to warrant the respect of doubtful physicians.
Recently the issue has been seizure activity. For the last few years I haven’t had any big seizures, so I considered myself seizure free…but that wasn’t actually the case. I’d been having what I termed, “little episodes,” on and off, since before my PTSD. The right side of my body would get numb and tingly, words would get hard to find, and sometimes I even felt drunk. The episodes could be as short as 15-30 seconds, or as long as several minutes. Sometimes one episode would lead into another, then another, until they became a blur. In those instances I often found myself lapsing into unconsciousness and having a full tonic-clonic seizure. Half of my neurologist refuse to accept I’m having seizures, despite EMT and physician documentation during the episodes, while others accept them despite the normal EEG results. I’ve never had an event while hooked up to an EEG machine. (I have another test tomorrow.
I think that’s been the hardest part of Behcet’s, or at least one of the hardest parts. The abundance of normal lab work exists, so it takes a lot of convincing when it comes to making specialists see that something really is wrong. I hate being made to feel like a liar or faker, and while I am technically a little crazy, I know the difference between my PTSD symptoms and my seizure/Behcet’s symptoms.
Getting diagnosed was a relief, but now I struggle with helping the people around me, including medical staff, understand what my disease means for me and my future.