Communicating with doctors

Started by PleaseWait, October 25, 2019, 08:29:03 PM

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Over the years I have been on a mission to solve my life long health problems. I've read so many journals and reputable journals I come off as a bit nutty at doctor visits. Mostly dismissive responses in which the Dr defers to surface manifestations as the "safe" bet to either avoid hard work to diagnose, or a fear that they could get something wrong the more complicated the case gets. Either way, I'm 42 years old now and been undiagnosed since age 11. Being pre-occupied by traumas does not help anything. I sound paranoid and its somewhat supported by tests. Except the serious pain which I have an explanation for but no one will hear me.

I have an autoimmune disorder related to susceptibility to the Epstein Barr Virus, VZV and HSV1. All work in concert or sympathetic to one another. My spleen was removed when I was 11 so I get all kinds of lymphatic symptoms which are increasing dramatically in pain level. I know the high mortality of chronic EBV problems is ramping up.

I have been through extremely low points where I felt so bad that I couldn't rationalize a reason that I should have to live this way. I honestly considered suicide. Even now I consider the assisted option here in Oregon. But I'm too young and not diagnosed terminal. I cannot work or reliably commit to anything really. I got boned by Social Security and don't even care to fight. I'm hanging on but find it hard to keep my momentum or build any for that matter.

In my wait until January stinkin 10th until I see a rheumatologist, I need to figure out a way to communicate with him so he doesn't think I'm crazy. I have plenty of verified tests. I'm not just saying I think I have it. I also have tons of family evidence that its genetic. I'm scared for my shortened future and for that of my children. My daughter was hospitalized at age 4 with Kawasakis, later ruled out as Mono. 2 of my sons with autism including myself. My Grandfather with Guille-Barre, myself as well.

I'm all over the place and think I need help sorting or preparing a presentation of sorts for my 90 minute appointment next stinkin year.

Any ideas would be super!


I've attached a comorbidity record form you can use for your visit for those health issues you think are related to the trauma you experienced. It has a link to clinical research about comorbidities (scroll down) that you could copy and paste and take to your appt.

It may be an idea to list genetic/inherited issues separately from those you think are trauma related. 


Quote from: Kizzie on October 26, 2019, 03:04:16 PM
I've attached a comorbidity record form you can use for your visit for those health issues you think are related to the trauma you experienced.

Thank you Kizzie!

Until recently I hadn't considered the exacerbated state and how stress triggers EBV, AND the comorbidity of it all. Now as I undsrstand it, it makes all the sense in the world.



When I communicate with doctors, I always try to look extra nice. It might sound dumb, but if I'm going to say non standard things, then I want to look as reputable as humanly possible, to the point of wearing business casual to my appointments. I've found that it does change the way doctors treat you, to an extent. They seem to take me more seriously when I look productive and put together. I know it's kind of a CPTSD symptom to not trust people will believe you if you don't perform in a particular way, but this is one that I feel like is really true.