I had my appointment with my primary care today to get meds for sleep and for anxiety from the work stuff (“asking for it” and “better than expected“).  Done.  We also talked about how the need for accommodations is part of what is bringing about the stress.  And by “need for…” I mean both my various physical states and the unaccommodating, unreasonable, and sometimes downright hostile attitudes I have dealt with at work.  PCP was very nice and took the time to try to recommend some strategies, suggested I treat them like they have personality disorders (there are two in particular who seem to fit the bill and who have caused or made worse a large amount of this grief).  I didn’t blow him off, but I did tell him I have a therapist and that I’m working on the behavior side of this.  So two scripts for me, and then we turned to reason number two for my visit.

Reason number two did not arise until I pulled up and parked at his office this afternoon.  I hurt myself.  As I was getting out of the car and the back of my shoe bent back, because I’m clumsy and apparently can’t get out of a car without catching my foot on everything between the gas pedal and the pavement.  I’m bendy, so I raised my right foot up while I was still seated to fix my shoe, which involves rotating my right hip out…and PING!!!!! went my hip.  On the inside, you know, the “groinal” region.  It still hurts when it’s rotated out or when I have to flex the quad.  Which sucks because I tend to sit cross legged (yeah, bad for me) which involves rotation and flexing.  Grrr.  Anyhow, since after doing this I had to sit for a moment with my leg out and my head between my knees so I wouldn’t pass out, then hobble in and around his office,  and since he’s going on vacation and if it turns out I really hurt myself, I’ll be S.O.L. for two weeks after today, I dutifully wrote on the intake form under “reason for visit”: anxiety and insomnia from work related stress; right hip pain from injury JUST now….

Oh it’s a good thing he likes me.  Because I am THAT patient.

Medical diagram of person demonstrating maneuvers to calculate Beighton Score for hypermobility

What’s your Beighton Score?

So on to the hip.  “Tell me about your hip…”  I tell him about what  I was doing when it went “ping”, what “ping” means, and about how my left hip has done something similar then forever after has been prone to just hurting like hell for no reason, and how yes my shoulder/neck do this too, and it did feel quite like it feels when my toes spontaneously dislocate themselves…which does happen with some regularity.  “I’m bendy” I tell him.  He puts it to the test.  “Can you now or have you ever been able to bend down and touch you plams flat on the floor?” he asks after moving my hands, wrists, and legs all around like I’m a gumby doll.  “Oh yeah, I can do that…” and I do.  “Ok, yup…have I referred you to rheumatology?”  No.  But it turns out there’s a rheumatologist who shares his office space some days of the week, who is in today, and who has just had a cancellation, so in I go.  Across the hall and off to see Rheum doc.  He also moves me around like a gumby doll, takes my family history (autoimmune, thyroid, aneurysms) and says “I’d like you to have genetic testing for Ehlers-Danlos syndrome.  You do have some hypermobility and with your family history of vascular disease, I think it would be good to check on…”  He goes on to explain basic genetics (dude, seriously?), says something about “type four”.  We talk about hypermobility in general, how it’s easy to hurt yourself by overextending, that the ligaments or something can “flip” then flip back (ewww, but yeah, ewww is what it feels like).  PT is mentioned but back burnered (I want to wait for work accommodation stuff to wrap up before I try laying on them the idea of me missing work regularly for 6 to 8 weeks while I paddle around in a pool with a gym teacher telling me that it shouldn’t hurt).

There’s more but that about sums up the gist of it.

More serendipitously (more than rheum doc being there and available just that minute), my PCP had also mentioned genetic  testing some time back, this summer I think.  I asked “and what do we do if the endocrinology work up is bust?” when discussing going back to the endocrinologists who blew me off the year before as needing nutritional counseling for hypoglycemia while ignoring the rest of  the referral for what my primary care thought was suggestive of pheochromocytoma , Medullary Thyroid Carcinoma or carcinoid/MEN….the diarrhea/flushing/thyroid nodules/elevated catecholamines, chromogranin A, and oh something else like that shit (which while elevated is not elevated “enough” for the endocrinologists to consider relevant I guess).  PCP had said “then I order genetic testing.  And maybe do some imaging.”

I had not yet followed up on that path since I am only this week having what the appointment which will likely be “THE GREAT ENDOCRINE BLOW OFF PART II:  your blabbity blah is only slightly elevated and that’s because you take medicine with caffeine in it,  all that pooping and overheating is just in your head, or is aggressive IBS and ultra early onset menopause, which we think will sound more acceptable to you since you’re a hypochondriac but really it just means we think it’s all in your head (and you’re female), so fuck off!”

I’m wondering how odd it would be for me to go to this genetic medicine appointment at (yet another) local B.A.T.H. and say “hey fellas, can you throw in a RET gene test too?”  Because I think that’s  the one that covers all that pheo/MTC/MEN crap.

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  1. I cannot believe you hurt yourself getting out of your car at the doctor’s office! Well, I can believe it…you have the worst luck! It sounds like this is a doctor that listens to you, and how lucky that the Rhuemmy Guy was there! Keep us posted on the Ehlers-Danlos stuff. That;s all you need is another diagnosis, but maybe it will explain some of your problems…and might help with your accomodation at work…who knows?

  2. Thanks Mo. I doubt I have Ehlers-Danlos, but I would like it if they would test for the RET mutation, which is why I think (as much as it sucked to get hurt) that there is a slight silver lining – sort of like “if it had to happen, I’m glad it happened there”. No word back from HR yet. Keep your fingers crossed for me.

  3. I thought ED through out your post and was glad to see they are thinking of it. Hope you get the genetic testing you need and want.


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