When The Doctors Just Shrug Their Shoulders
I don't know how many of you have experienced this but one of the more frustrating things I've been dealing with over the last year is a problem that no doctor seems to be able to help me with. And I have access to the world renowned Cleveland Clinic, so I've seen some of the best. Here's my story.
A little more than a year ago I developed a array of symptoms that all appeared at the same time. Pain on the left side of my head, concentrated under my left eye. Pressure in the back of my head. Tinnitus in my left ear. Dizzy spells that would feel like a rush of adrenaline ... that that feeling you get on that first big dip of a roller coaster. And a lump on the left side of my neck. At first I thought it was a sinus infection because the symptoms were very similar. But that wasn't it. Then, of course, I was afraid it might be cancer because of the lump. But a CT scan of it showed the lump was benign. I've seen everyone from my family physician to ENTs to spinal specialists to neurologists ... you name it. Every type of doctor under the sun .And a year later no one can tell me what this is.
I'm relatively certain it has to do with my PsA and anklosing spondylitis because it's positional. The head pressure and ear ringing get louder if I sit or lay down in certain positions. That's also when the adrenaline rush sensation tends to happen. But in this day and age of medicine to have doctors simply shrug their shoulders at me is frustrating. The last one told me, "Well the good news is, as far as I can tell, it's nothing serious. The bad news is that I can't tell you exactly what it is."
So I'm stuck. With left-side head pain, pressure, tinnitus, occasional dizziness and a lump on my neck. And no one knows the cause. And that sucks. I'd give anything to find a doctor who could tell me what this was, even if there was no way to fix it. Because not knowing after a full year of trying to figure out what this is has gotten to be pretty stressful.
I'm trying to make peace with the fact that there may be no answer. But I struggle with that because that's not me. I like science! I find comfort in facts. Not knowing is kind of a torture all of its own.
Very frustrating for sure,
! Does the pain come and go?
-Victoria, Community ModeratorThe symptoms get better when I'm standing. Trouble is, I can't stay standing my whole life. That's what especially insidious about my symptoms ... they prevent me from ever relaxing because the come on stronger when I sit or lie down.
While I can't begin to understand and imagine the pain you experience on a daily basis, the whole experience of doctor's shrugging their shoulders is one I do relate to...over the last 2 years I've been trying to find out the source of my foot pain and neuropathy....which led me to being tested for everything by my rheumatologist (RA, PsA, Lupus, etc.). And while I did end up getting a diagnosis for my overall pain, the doctor still shrugs his shoulders when it comes to my foot. Almost like, "Well, I can't find an answer, so here's a script for something else."
It's so infuriating. It's almost as if (and I've seen about 7 other doctors) they go through the differentials, don't reach a conclusion or perfectly fit diagnosis and then give up. There's no empathy or even curiosity to find out what this could be from. No motivation to solve the problem. They seem so quick to just say "idiopathic" or "I just don't know."
And then, when I challenge them with something I've read or learned, they get defensive or quickly dismiss it. It's infuriating, and even soul crushing.
If I could go back and do my life over again I think I'd become a doctor. In fact, if PsA had hit me in my teens rather than in my late 40s, I probably would have become one. I used to put physicians on a pedestal thinking that there was no way I was smart enough to be one. One thing I've learned over the last few years is that I am plenty smart enough to have been a doctor.
I did, too. It wasn't until I got much older (and the doctors who are treating me are now peers) that I realized that just because they have a degree doesn't mean they are any better (or smarter) than I am. They're just people - like everyone else.
