Mystery Diagnosis Need Help

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I have been dealing with debilitating symptoms that put me in the ER multiple times and doctors still don't know what it is. I'm looking for any suggestions, as I'm at the end of my wits.

My symptoms started about 4 months ago... The worst headache I've ever had in my life, disrupted sleep, waking up in panic attacks, heart beating out of my chest, and feelings of paralysis or tingling in my limbs. The hospital did all the critical tests - MRIs, blood tests, CT scans, spinal tap... etc. They decided I'm not currently dying and sent me home. I met with a nuerologist 2 weeks later who told me I have "new daily persistent headache". I was very frustrated because I KNOW that's not what this is.

My symptoms grew to having extreme pressure feelings in my head and eyes. I felt like my eyes were dry like I could not cry. My salivary glands were swollen and I felt pain in my jaw and my throat felt like I could not swallow. Combined with extreme fatigue. Sounds like Sjorgrens right? I met with a rheumatologist and had bloodwork done. Everything came back negative and he said it's probably fibromayalgia. I'm taking medication for it and it's not helping.

Just last night I woke up with this dry head pain where it feels like I'm losing conciousness, my heart was pounding and my veins were popping out of my head (this has happened before). It feels like my vision is going and I have nausea but I never throw up. This is followed by dry mouth and jaw pain, difficulty swallowing, pressure under my right ear where I had surgery, my scalp at the very top of my head goes numb and feels tight.

Please, please send me any ideas you have. I'm 32 years old and feel like my life is ruined.

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  • Posted

    If you don't mind my asking: what surgery did you have under your right ear ( was a nerve damaged perhaps)? I am not a doctor but I have heard similar cases with mysterious pains and no diagnosis after ....nerve damage. Perhaps you can ask a(nother ) neurologist to check this?

    My friend has Sjogren-vasculitis and lupus and is desperate too because no specialist believes she can eat as good as nothing without having awful belly pain... so she only has a little bone broth every day.

    Her desperate conclusion is that gastro-enterologists, , immunologists and reumatologists or allergologists or most classical specialists do not know enough about Auto-Immune Disorders and always talk about a grey zone in which they put symptoms they don't understand. No mystery diagnosis in her case.... NO!

    NO diagnosis instead. This has been going on for several years now. ...

    However, don't lose hope... My friend and I hope you will find a good doctor for you and herself and so many other patients.

    kind regards,


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  • Posted

    Please consider CIRS, will not show up on normal blood work, will show on MRI if done with neuroquant. Blood work to back it up is usually, TGF-beta VegF, MMP9, C4a,C3a among others. Also visual contrast test.

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