Which antibody?

I just got a call from my primary care’s nurse asking me “hey Dr. ________ thinks you had autonomic antibody labs done, do you remember which labs they were?”  Now one thing you have to know…these are not common labs.  The one in particular that they were thinking of is the serum ganglionic AChR antibody which goes with Autoimmune autonomic ganglionopathy (AAG).  Never heard of it?  Don’t feel bad.  Most doctors and labs have not either.  And if you just say “anticholinergic antibodies”, odds are you’re gonna get the wrong test.  Gotta be specific, especially on the ganglionic part.  This call wasn’t about me, or my medical record.  It was about another patient who he wanted to order this lab on and wanted to make sure he ordered the right one, where did I have it drawn, who ordered it, etc.   I almost asked if it was my cousin (our parents were adopted from different birth families, we were not raised together nor did we see each other often, but we share a LOT of medical problems….and she just started seeing my PCP this past November) but decided that would be crossing a line.

So there’s another reason I love my primary care.  He knows I came into his office with papers about AAG last Fall, telling him this is what I want to check for. And not only does a patient researcher not freak him out, he sees this as a resource.

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  1. That’s so g-r-e-a-t! I bet it was your cousin, too. I can’t imagine a nice and interested doctor. Like, what IS that? I had an internist in Seattle like that, but he had a 3 hr wait as he spent 3 hrs with you (here you wait 3 hrs for a 5 min appt with a horrid doctor). I started seeing him as I was getting sick and had the lupus symptoms plus the EDS junk and it was really hard to sit that long, but I still have my records from him and he referred me to a rheum at the clinic when I came back looking like the living dead. An all around great MD… Such a dying breed I tell you.

    • Yup, 3 hour wait is about right. On the plus side, my doc’s office staff are very upfront about it and encourage you to call about a half hour before your appointment “to see how far behind he’s running”. 🙂

      • I would have less of an issue if they let you call and come later, even though I still won’t get any sleep and will have to get up so early. Why do I have to wait when they know the doc is always behind and just bad all around?

        I have to see another new doc later this month for my yearly exam required by insurance who has horrid reviews and a very long wait it seems. Ugh! I was told I needed to show up 30 mins early by the rude receptionist and I had asked that they mail me the stupid forms so I can try and fill them out. I haven’t received them so need to call again but I was told that I still need to be there 30 mins early even if the forms are filled out. Wtf? I’m so dreading it and have a really bad 5 weeks of appts coming up. (Screaming!) I swear to you that if I didn’t need to do this preventative stuff and get my meds, I would never go to the doctor again. I think I’d actually feel better with more sleep and less stress as all they do is waste my time and make me so irate! :/

      • I do not get why doctors’ offices don’t make accommodations for patients who have vision problems. And boy, they really don’t. I like to get the forms early too because my printing is painful, cramped, and hard to read. Ideally, electronic forms but you know, the office shrews can’t handle that.

      • I don’t know why they don’t even have a website! I have been able to get forms that way with some docs, even if they’re still on paper and super hard to see. I have an awful feeling about this new doc I have to see due to my new, crappy PCP not wanting to do women’s wellness exams or whatever the new lingo is due to my EDS. Totally lost there, but I think I’ve seen all the other PCPs here and deplorable, so stuck with this doc for now (and no wait with her at least).

        My biggest issue with the wait is that I can’t sit in those chairs–it kills my upper body and I don’t do well with standing for 3 hrs, either. And then it’s always freezing, or my GI tract decides to have some fun, I’m exhausted and feel worse from not sleeping, and yada yada. I just don’t want to go to the doctor anymore. If I could drive longer distances and it weren’t so dangerous now, I’d cross the border and get 6 mos of meds in Mexico and be done with it. It’s so easy there (and cheap)! I’d move, but not to some cartel-run border town. Argh! They were bad enough before the craziness. :/

      • That sucks so much! I don’t blame you for being worried. Sometimes I can go wait in my car at appointments…I wonder if that’d be an option. I know it’s a lot of back and forth though.

      • Nope, you have to wait in the waiting room or that’s it. I tell you that the counter they sit behind makes them feel so damn important. If I had good docs, I know they’d let me have some accommodations, but I just don’t. Booo!

        Btw, I realized that that guy did set my font at the largest. No! What to do if my vision gets worse? I thought I had 1 more font size to go. :/ That TalkBack was really a nightmare and I tried it with my eyes closed and was so lost. Now I feel even worse about your students who are totally blind. 😦 I always thought that if I could get up early and sit for more than 10 mins, I’d see about that blind place here, but I think I’d just get more anxiety knowing I could end up even worse if my CXL fails as I was on the fast track pre-op. I think I need a drip of Klonopin because I take so much for my spastic muscles (and don’t feel it at all) and it does nothing for anxiety. What a nasty beast!

      • Well…truthfully, none of my students is totally blind right now. that doesn’t mean that any of them can use the visual only interfaces on their tech. All of them have some vision. All of them use a combo of visual, auditory, and tactile cues for interacting with their phones and computers (more phones, since they’re so small). But yeah, they all look at the phone too. Blindness and low vision is sort of the catch all phrase we use. But all of them have low “enough” vision to count as legally blind. Hence “student who is blind”.

        Talkback and things like it are hard to get used to. Especially if you are not an auditory processing preferred person. I prefer print and I have a tough time with the auditory. I am working on it though, and I realized that for me, a lot of the “tough time” I have with it is a sort of embarrassment at/fear of making noise. It goes with being raised in an abusive home. I know that for certain, I don’t feel it at the time but when I think about it, I am quite sure that is the source of my issues with being “noisy”. Any chance that resonates for you?

      • Thanks for sharing. I’m a super visual person too and have massive issues with auditory learning–my whole family is that way so doomed. Also, there’s a bit of a debate on the big, KC blog on here as KC is called a non-blinding disease, even though someone can have 20/1000 vision or more I presume. I think the definition of blind is all wrong and needs to be redefined by disability and not by being blackout blind, which you never will with KC. Even if you get to 20/200, it’s still not considered blinding in the med literature, just majorly distorted. So, you make sense to me in how you refer to the students.

        My family was different than yours I suspect, but I think you are referring to having to walk on eggshells or try to not be seen to avoid consequences. If you recall, I don’t remember my mother for the first 10 yrs of my life and my father was my parent, but he could be very mean in his odd way of teaching me to be like him. I wasn’t afraid of him and stood up to him very early in life and he got very mad, raised his voice, and had the angry face when I did that, but I still wasn’t afraid–probably because I knew his good side. My mother was really the worst, but I wasn’t afraid of her as she was very meek with my father and I saw that at a young age, as well. I knew she was weak in essence, To this day, she can’t stand up to her husband so she seeks me out to pick a fight and I suspect that’s what she did when I was growing up. So, it was more like lots of screaming arguments where she got very nasty and now she likes to get me at my weak times (like when I’m really sick) and odd things like that.

        The violence was more like my father losing his temper in 2 seconds and hitting my arm really hard and kicking his cowboy boots into the drywall in my room, which I plastered with fashion ads I tore out of magazines, and my mother actually broke my bathroom door down when I locked myself in there to get away from her craziness once. So, he was more of a short-tempered tyrant and she was the hysterical woman who put me down constantly, but I think I really wasn’t scared of them due to all I mentioned earlier. I really just wanted to escape it, so I stayed at friends’ homes and then a boyfriend’s place my part of my Sr. year. I think I intentionally stood out and acted tough to intimidate her and others and I do know that I’m still the only person who can stand up to my father, hence the estrangement, but I do understand what you mean. My step-father, who showed up in my 20s, is a verbal abuser and a big guy (unlike Napoleon father) and he yells, which tends to freak me out and make me do the egg shell dance. I stopped visiting them years ago when he started his crap on me as in his mind, a non-working woman (me) = my meek mother. That was enough and I do tend to not make waves with him in person to avoid his unpredictable nature. He’s not that way with his spoiled kids (both around my age), so everyone sees a different side of him.

        Hope any of that made sense…

      • Sounds like there’s some conflict between legally blind and medically blind.

        I definitely get what you’re saying about learning/info processing styles. I do rely on my vision way too much to keep me upright, washing my hair in the shower is a risky endeavor, and I blame the crap input I get from my crappy joints to some degree. But I’m just not super visual. I remember in school when teachers would put up diagrams and be like “see how simple and clear this makes it?” I would shake my head and shrivel up inside. Just explain it to me. Seriously. In words. Better still is a nice discussion with analogies. That said, I did resort to visualization when taking formal logic. Couldn’t keep those truth tables and logic forms straight without it.

      • I think it’s best to have a mix of learning styles because you could end up like me and then what? :/ In my case, It’s pure DNA so no way around it. Shoot!

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