Behcet’s is a bitch. Getting diagnosed takes a long time. My 7-8 year actual struggle to be diagnosed is so short compared to many patients. I did have symptoms as a child, but they were vague, and we weren’t really pushing to figure it out. With Behcet’s, a lot of the time, your lab results are normal, or normal enough. You may have markers for inflammation, or whatever, but nothing that shouts, “Lupus!” or some other autoimmune disorder. This was me for years. I had a positive rheumatoid factor once, but it was a low positive, and while it has popped up positive here or there, never strongly so. Getting diagnosed was symptom based, and then I got tested for HLA-B51 and that cemented that yes, it was Behcet’s.
During the Behcet’s struggle, there was the little fact I was having weird episodes that looked like low blood sugar, but weren’t. Then I started having what appeared to be strokes, but weren’t. Then we had the full blown seizures. They were infrequent at first, but as time progressed, became more and more of an issue. This all coincided with my Behcet’s (which wasn’t diagnosed at the time) getting worse. Even when the Behcet’s diagnosis came, nobody could sort the seizures out. I was told I had partial seizures, the drunken feeling episodes/low blood sugar feeling episode, as well as the stroke episodes. I was also told that those generalized into full tonic-clonic seizures.
Except all my EEG tests were normal, so every time I moved, it was hell. I was sent to at least 6 or 7 psychologists because neurology determined repeatedly that I did not have “true” seizures, but pseudo seizures.
I found a neurologist I loved, he started treating me, we got my seizures under control with medication, something that apparently isn’t common with pseudo seizures. We would do EEG tests from time to time, and they were always normal. He never forced me to go to psychology. He told me time and time again that they were seizures, and that not all seizures are easy to see on EEG, and that you have to be having one for the EEG to catch it.
So today…I’m put off by a nurse practitioner I’ve never seen before going over my chart, but she’s so sweet. I told her I was there for a routine follow-up, and to discuss decreasing my Keppra as I’ve had no seizures since starting IVIG. We chat about balance issues, and I again tell her that I’m always going to be off, but that I look “normal” when IVIG is working, and just get drunk when it’s time for more. Then she mentioned that there was a note to go over EEG results. There were two, one was from the company that botched my first one, only I didn’t know that, so when she said she couldn’t read it, I was so annoyed because I was not doing a third. 72 hour home monitoring is itchy, and when everything is always normal, it’s just a waste of three days. She clicks on the second, and I tell her, “I’m honestly not worried if it doesn’t pop up, they always come back normal, I’m used to it by now.”
Now…we’ve established I have seizures. She knows I’m 100% aware that I have seizures, and other severe health issues, so she’s comfortable with me, and says, “Oh, no, the results were abnormal.”
I pause, because what, and then I remember that sometimes one side of my brain is faster than the other so I am assuming that she means that, or some other nonsensical anomaly. “Oh, yeah, sometimes they say one side speeds up, it’s always normal in terms of anything significant for my seizures.”
“No, actually, we did catch abnormal electrical activity that allows us to diagnose you with epilepsy verified by the EEG.”
So I burst into tears, terrifying the NP, who hands me a box of tissues thinking she’s ruined my life. I have to explain to her that it has been years…12 in fact…and I’ve been literally ignored in ERs while seizing because it wasn’t a “true” seizure. I’ve been doubted. Sent to shrinks. I’d actually been kicked out of practices because they called me a liar. After that she was teary eyed.
For now, I still have to take tons of Keppra and a little Vimpat, but in 4 months we are going to start trying to decrease based on the improvements IVIG has had. Turns out my doctor asked another hospital to admit me for IVIG because of my severe neurological state…they admitted me, but decided IVIG was pointless, instead spending 9 days of random things until doing steroids. Steroids worked, but as I weaned off the symptoms came back.
I won’t lie, I’m a little bitter. I could have had IVIG 2 years ago. Where would I be now? It’s frustrating because I do want to settle down with someone, have a life, however that life ends up being, and I’ve spent so much time being sick and waiting for treatments to work.
But I won’t be totally bitter. I will mourn what I experienced, and hope that it helps others in some way, as we navigate this awkward journey.