getting it wrong

I finally have my appointment with the runner up very special specialist today.  I’m not sure that she’s very special, but she did a fellowship at the BI-BATH’s autonomic center and she’s who is available, so off we go.  For an 8:00 appointment.  It’s costing me work cred and bowel function so golly I hope it’s worthwhile.

In preparation for this appointment, I got a copy of the tilt table test, the most recent one for which my PCP wrote a short but thorough referral citing the gastroparesis with significant unintentional weight loss, hypotension, orthostatic intolerance, and references the 2010 tilt test with syncope in his a request for a work up for autonomic dysfunction.  On this year’s tilt test, in the “referring Dx” section, it says simply “lightheadedness”.  Well that’s not right.

I think today, for the first time, I will actually go in armed with papers.  I don’t usually do this because my sense has been that it puts doctors off.  But there are two really specific things that they need to check on and playing the “not too knowledgable” patient has, so far, not gotten me very far.  Here’s the Mayo clinic’s Autoimmune Dysautonomia Evaluation Testing Algorithm and the Mayo Clinic’s Paraneoplastic Evaluation Algorithm.  A bit of overlap, which means a bit of “two birds, one stone”.  Shouldn’t be too tough to run, I just need someone to order, interpret, and follow up.

Here’s hoping that’s what I get.

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  1. Hope it went well. I couldn’t zoom up your links. I don’t know why that sometimes happens w/PDFs. It’s the Chrome (browser) zoomer button–very descriptive there.

    Anyway, I say always bring in paperwork. I do and some docs appreciate it and some don’t. I also bring in EDS info now and get the same response. I met a blogger on here who has a binder! Oh, would that be right up our alley! She has all records (I’d need a suitcase), Dr.’s cards, etc. Ooooh. I thought it was pretty nifty due to my love of being organized. I just have things in my portable file folder due to the transient life and pull what I need. Oh, another tip that you probably do. I keep a medication list in Word–old school here–and just print it out so I don’t have to put 25 meds in that little space they give you. Most docs here are not tech savvy and do everything by hand (one doesn’t even do scripts electronically!!!), but you probably have some app or something for this. I don’t even have data on my phone (good due to my vision), but with my meds/dosages changing, it just makes things easier so thought I’d share. Still want that binder so I can really be a Professional Sick Person and then have a business card again! Haha.

    • I used to have a binder. Now I just try to bring them what I think they’d want loose leaf. And I do the med list. I keep an updated one in dropbox, which is an app and a program and “cloud” storage but I usually print it though because you are right about them being very paper oriented. I cannot fit my meds in that little box on their forms, not without killing my hands trying to write legibly but small.

      She was a dud. Refuses to do the tests for ganglionopathy because I could feel skin prick sensation. Discarded the not sweating info. Says I just need to work out.

      • So sorry about the doc. You just need to w/o more? I was an atrophied mess for 6 yrs and just had the damn pain and sleeping issues. Wtf? I do PT and that makes my few hypermobile joints stable and I have more stamina in Wally World, but that’s it. Period. Jesus, this sounds like what they told Sheep about her daughter: “She just needs to exercise more.”
        Hugs. 😦

      • It does, doesn’t it? I was thinking of Gen actually after the appointment yesterday. I gotta say, I am not a law suity type of person. Really I’m not. I’ve had actionable discrimination at school and at work, and on neither occasion have I even sought out a lawyer. However, in this case, if it turns out I DO have what this doctor would not test for and I lose more function while waiting for someone to test for it, I think I will consult an attorney.

      • Yay! Pull a Larry on her! Oh, I have sued people before (nightmare on your own, but won) and threaten like mad. Learned behavior from father/Larry twin. I still think I should have done something about that failure to Dx with my keratoconus. Grrr. Anyway, does sound like Gen’s story so no more making fun of Canada. I really had more respect for you city!

        I need to read your post but have to go to bed. I actually had to cancel PT today–and I never cancel anything–as I was/am so sick from this monsoon that rolled in this weekend. So, I’ll be back online tmrw night after the ol’ counselor/errands and it better have dried up!

      • Tried to reply to this and my internet died. Boo.

        Sorry to hear about the monsoon. I hope it leaves soon and you feel a bit better.


    I just noticed your “follow blog” box is gone and think you had that here and on you blog. I took it off my blog, but it’s still in my comments. I’ve gotten 3 random e-mail followers this past week–no comments or anything and one is–you can figure that out. Is something going on? I just got done with the massive spam attack last month! I do have have someone in Pakistan (KC central in S. Asia) and another who left a safe comment, so they’re OK, but the others are creeping me out. So, just curious. I don’t want to leave out the option for those not on WP (all KCers), but what else to do? Grrr. I though I was safe if the option was only in my comments. Why are people such turds? I’d also like to delete the 50 fake followers. Oh, Sheep’s about to blow a gasket about that. I have a major anti-Zionist following me! Effer!

    • WordPress was having some kind of hack attack or something not long ago. I don’t know where my follow box went…wonder if the powers that be took them away for a while.

      • Huh. It’s back on your blog–just saw that. How did I get those followers, then? I wish we could delete people–not fair! Oh wait, now it’s missing from this box?! I’m lost. :/

      • Stranger and stranger.
        I wish we could delete followers too. I have some spammers in there.

      • Agreed! It’s our blog so we should have the option of deleting them. I hate the ones that just follow you so you’ll go to their blog w/3 photos and 500 likes. Sometimes I leave a random comment just to screw with them. Hee hee. Does this make them feel special and popular? Oy.
        Goodnight/morning… 🙂

  3. it sounds as if your conditions are a full time job! Good luck!


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