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When The Doctors Just Shrug Their Shoulders

  • By Sean

    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.

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  • By Sean

    The 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.

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  • By Rebecca Keymaster

    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.

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  • By Sean

    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.

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    • By Rebecca Keymaster

      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.

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  • By Grace

    Do you have Thyroid issues? I had SEVERE swallowing issues, ringing, vertigo and panic attacks from issues with CHOKING and 3 yrs later I’m had thyroid ultrasound revealed nodules and eventually diagnoised with thyroid cancer now I have no thyroid and all my Endocrinologist are a joke and I’m practically crippled with body pains. Hope u feel better.

    Anyone know why typing here the print is so light?

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  • By mich54

    I can probably beat all that. I have been trying – for 30 years – to figure out what is wrong with me. Same thing as all of you say….. the doctors didn’t know what to tell me and so they just basically blow you off. I finally figured it out (on my own.) I have had progressive stiffness and soreness all over my lower half of my body. Low back, hips, pelvic area, knees, ankles and feet. I have had a finger swell up twice. A wrist swell up once. And the last thing was my ankle swelled this past Labor Day weekend. I happened to be going to a dermatologist for alopecia areata for 2 years. At one of my visits, I asked her to look at my scalp at a spot that was itching and crusty and even bled once. She immediately said… you have psoriasis. So she gave me some medication for it. I started using it and it got the psoriasis better (I am still using it.) A couple months after that, just for the heck of it I typed in psoriasis on the internet and lo and behold, I started reading about psoriatic arthritis. It was like a light bulb went on! I was like…OMG this is all the issues I have been having all these years! Well to make a long story short, I went to my doctor….told him about my ankle (brought pictures) (I had gone to Urgent Care for it Labor Day weekend because I couldn’t even put weight on it.) and brought my wrist pictures too. I told him about the dermatologist diagnosing psoriasis and I told him I think I have psoriatic arthritis! I could see he got a little flustered. Because I have been going to him for 20 years – all the while – telling him about all this stiffness. I had gone to a rheumatologist he had sent me to, but he never helped me either. So finally, I went to another rheumatologist that an acquaintance told me about. My primary sent him all my information and the pictures (I assume) and he started me on methotextrate. I did that for over 3 months and it did nothing. So now, actually tomorrow, I am going to start Humira.
    ps. You would think the dermatologist might have inquired a little more being I was being treated for alopecia areata and then having psoriasis. Both auto-immune issues. But again, she acted like no big deal. They really don’t care much.

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  • By mich54

    Oh and one more thing. I had a heart blockage at 53 and had to have angioplasty with a stent. I had never smoked. Now, I have read that PsA can cause heart damage. Being I first started feeling like this in my early 30s and went 20 years with no help, I wonder very much if that heart blockage was due to not being diagnosed and getting on medication. Of course the doctors will never say that is why. Are they going to say, yeah – you should have been diagnosed much sooner and maybe you wouldn’t have had a heart blockage?? Never. I am now just about 64 – in a few days – and have lived all these years with this stiffness and soreness getting worse and worse. I have high hopes for the Humira. Fingers crossed.

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  • By mich54

    Also….. after I was diagnosed with psoriasis – I remembered that I had it on my scalp as a child. But of course, I never thought to mention this to anyone. My mother always referred to it as sores on my head. We had to get special shampoo. I was very young. So, it never occurred to me until I read all of this about PsA that that would have anything to do with all this stiffness.

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  • By Sean

    When I was in my early 20s I noticed a dry patch of skin by my right ear that I could never get rid of. Because my ear covered it and it wasn’t really visible, I never thought much of it. Then I learned it was psoriasis. But until just a few years ago I simply thought psoriasis was dry skin. A couple of small patches of dry skin? Big deal. It’s nothing that ever concerned me.

    Then about 5 years ago I got really sick. Bronchitis and a sinus infection that lasted for weeks. When it was finally over I noticed that my chest hurt. So I started Gooling (of course) and found out about something called costochondtitis. I assumed it was from all the coughing and that eventually it would go away. Sometimes it takes a few weeks, I read. So still not worried.

    But by summer when I still had the chest pain I went to my doctor who referred me to a rheumatologist. I also had shoulder pain and wrist pain but I just assumed it was normal middle aged guy who works out too much stuff. Just nagging injuries from lifting weights. When I got the diagnosis of psoriatic arthritis I didn’t really know what to make of it. I’d always thought of arthritis as getting a little creaky as you got older, nothing more. I didn’t really understand autoimmune disorders.

    Really learning about what you have, how it affects you and what it means for your quality of life is a journey. Like your heart issues, mich, I just learned two days ago that I have BPH. And while no studies (that I can find) link it to PsA, studies HAVE linked it to RA. So I’m pretty certain the inflammation is responsible.

    It’s tough, sometimes, not to feel like a double lottery loser. Only about 2% of the U.S. population has psoriasis and only around 30% of that 2% has psoriatic arthritis. But you have to work past the “WHY ME?” so that you can really focus on your health. My wife likes to say, “Everyone has something.” Which I suppose it true in a way. I’m just glad we live in a day and age where it’s more treatable than ever.

    Oh … and that little scaly patch behind my right ear? Gone for the first time in 30 years thanks to Humira.

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    • By mich54

      Sean what is a BPH? Haha about the scaly patch gone with Humira after 30 years. I don’t care so much that I have it….. I just want to find some solution to it. I was more upset that they could never figure it out. I was actually happy to come up with a reason! Now let them find something that will get rid of the stiffness. Did I remember you saying on here somewhere that 1 in 3 don’t find a biologic that works for them the first try?

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    • By Sean

      BHP is Benign Prostate Hyperplasia. In other words an enlarged prostate.

      It’s a more of an irritation than anything else and nothing that’s life threatening. And it’s a COMPLETELY separate thing from prostate cancer.

      There’s a GREAT new treatment out that’s not widely available in the United States yet called prostatic artery emboliaztion where they insert beads in the arteries that supply blood to the prostate in order to shrink it. It should be more widely available by the end of the year so I may have that done once it becomes more commonplace as it poses none of the risks of prostate surgery.

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    • By mich54

      oh yeah that’s very common in men, right? My brother had surgery for it. And my husband needs surgery on it, he thinks. That would be great if they could do that new procedure.

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