sometimes you eat the bear…

As a wiser man than me once said.

Yesterday, I did not eat the bear.  Yesterday, I saw the not very special specialist who has very selective hearing.

Why selective?  Because she apparently missed the part about the not sweating, although she did ask my husband “what does the sweat pattern on the back of her shirt look like” and my husband did say “she doesn’t have one anymore.”

I am in a foul mood.  The not very special specialist ordered a bunch of tests, only one having to do with pathology (direct) of the autonomic nervous system and when I called back to ask about an acetylcholine receptor antibody test, the answer (relayed by secretary) was “she didn’t order it because it’s not needed.”  Either she doesn’t feel I’m sick enough or she just doesn’t listen.  I am proud of myself for one moment.  During my history, after I had explained the vertigo that started in 2005 in response to her questions, she asked “did they do anything else after the MRI?”  I said “No”.  She looked at me sort of curiously and with what I interpret as incredulity “what did they say it was?  Did you see a neurologist?” “Yes, and like I said, he did an MRI and told me it was normal and that it was probably benign whatchacallit vertigo, or probably my migraines and had me take more migraine meds.”  She shook her head.  This happened in relation to two things, something else aside from the vertigo, I think the massive weight loss in 2005.  So later, after she told me that she didn’t think what was going on with me now was properly autonomic because I felt the skin pricks that she did on my legs, she commented that I didn’t look ok.  “What’s wrong?” she asked.  I said “I’m just sitting here thinking about how in five years I’ll be in some other specialist’s office telling them about the autonomic symptoms and how they got so much worse in 2013, and they’re gonna say ‘they didn’t do anything?'”

She kinda looked like she had a bad round of gas at that moment.  Yeah, I fucking went there lady.  Deal with it.

Oh another priceless moment that I’d like to frame.  After she tells me that it’s good news that there doesn’t seem to be much wrong with my autonomic function (because I felt the skin pricks, she was very firm about that), I said “I suppose it is reassuring that I won’t have to catheterize myself in a year to pee.” and she says, no lie “well I didn’t say that.”

No really, she did.

So for review, let’s list my symptoms that are not autonomic, according to the not very special specialist.

  • Dizziness and lightheadedness
  • Fatigue
  • Tingling and tremors in extremities
  • Extremely low blood pressure
  • Syncope and near syncope
  • Tachycardia (POTS)
  • Bowel dysfunction/constipation
  • Rather sudden onset gastroparesis with 12 lb weight loss in 3 months
  • Hypohidrosis
  • Dry eyes
  • Chronic oral thrush, suggesting a rather dry mouth
  • Heat intolerance and flushing
  • Erythromelalgia

I do not have much hope that the next very special specialist will have much else to do or say either.  I guess I just don’t come across as sick enough.

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11 Comments

  1. Wow! I wish I had the balls to say that kind of stuff. Sorry it was a bad doc visit.

    Reply
    • Mo, the trick is sincerity. I was 100% sincere and not snide. It was her reaction that made both moments into a sort of “gotcha”, you know?

      Reply
  2. I’m just confused. Is this the one that specializes in neuropathy? I’ve only seen 1 neurologist in my life, but I never heard that neuropathy was an ANS issue. I should have asked you about that before. I’ve also never heard of the pin prick test–had that many times yrs ago–being a diagnostic test for ANS issues. Is that true? Even my ANS-y father would feel that! I had it due to numbness/tingling in extremities pre-meds and suspicions of MS. MS isn’t due to a faulty ANS!. Isn’t that test for nerve damage, etc? Like if you had MS, diabetes, and so on. Oh, also had it the 100th time I electrocuted myself (long story) and went numb on one side/had a burn where it exited so went to the ER. Not ANS related, either!

    I have lots of ANS issues too as you know, just different for the most part. The big one is that I’ve had Sjogren’s symptoms since ’06 w/o + antibodies, which can be neg. even with the disease, but I found a drug that helped my mouth and you know the mess with my eyes. I was told it was Sicca Syndrome, although that comes up as Sjogren’s. Who effin’ knows? I saw that in your list (dry eyes–yes!) so thought I’d mention, but it hit my mouth first and then my eyes within 2 weeks and was so bad I ended up in the ER; I couldn’t even open my eyes or get food down. I was told this was an ANS issue by a rheum, so presume it is–no real Tx for Sjorgen’s anyway and the lip biopsy is really bad I guess. Anyway, I can feel a grain of rice if I step on it, so I’d flunk that lady’s test too. Wtf? Oh, I want you to go to Baltimore! It’s not super far–can you swing the cost? I know the waiting list for those docs must be long, but I don’t think these docs (like mine) have the knowledge. Glad Husband was with you…. Sweet guy.

    I thought your comments were funny, regardless. 😉

    Reply
    • Ah your outrage makes me feel loved. 😉 Nice to have someone to share it with because I am like “?!”

      Ok I really barely only get the neurology stuff, and I have no sense of the large grain wiring side of things (dorsal what now?) but I do know this. Autonomic dysfunction most certainly is a neuro specialty, although what causes it may not be. I know that you can have pure autonomic dysfunction of a variety of flavors and that it’s called “pure” because it’s autonomic dysfunction WITHOUT motor or sensory involvement. One type is even called “pure autonomic failure” or PAF. That means no or limited sensory symptoms and normal objective testing, like pin-prick testing for (sensory) small fiber function. Her reasoning, I think, goes: common cause of autonomic symptoms is small fiber neuropathy, which also has sensory symptoms. If your small (sensory) fibers are ok, then hey, no small fiber neuropathy! And no autonomic dysfunction, even though you don’t sweat when hot and can’t digest your food and your bladder is getting in on the act too. Ta da, problem solved, check please.

      Not certain, but this seems to have been the logic she was employing. Problem is, I am not diabetic. I never said I had sensory symptoms. the pain in my hands and feet is entirely from craptastic vascular control, which is so easily demonstrated by their calming down in color, heat, and pain level if you get them UP and let the blood drain out of the clearly dilated, engorged veins. And which part of the peripheral nervous system controls that, and bladder, and gastric emptying/peristalsis, and thermoregulatory sweating? Three god damned guesses.

      There’s an antibody in people who have autonomic dysfunction that is not progressive PAF and that is not due to some other system imposing itself on the autonomic nervous system. It’s a ganglionic acetylcholine receptor antibody, it’s elevated in a few conditions with pure autonomic symptoms, and that’s what I asked if she’d order. She refused, because, I think, I don’t have sensory symptoms. Jeez, it’s not like I said “Oh please do a nerve conduction study on me” or “please biopsy one of my nerves” because those are the wrong side of the peripheral nervous system. The ganglionic acetylcholine receptors are not the wrong side, they are very much the right side.

      Is she the specialist? Sort of. She’s a neurologist who did a fellowship with the very special specialist at the autonomic center up here. This is what I get for going with the runner up I guess. Or maybe it’s me, how I present. Maybe I’m not sick enough. Maybe you have to wait until your orthostatic symptoms are so bad you can’t stand up, or until you can’t urinate without a catheter, until you can’t have an orgasm, until you develop a series of pseudo-obstructions in your intestine, or until your eyes lose their ability to respond to light. These are all symptoms that go with this particular entity that I asked her to test for, and in some cases treatment can help stop the progression. If this doctor’s rotten science delays my diagnosis and my body learns one of these new tricks, I will be so very very angry.

      Reply
      • I’m a rager so I got you. I just went off (with swear words!) at the idiotic compounding pharm. (3 people!) who sent MM’s cancer med w/o ice packs and is now separated and bad, as in the med is bad and won’t work per their pharmacist. They’re trying to get it to me with ice as requested by Fri/Sat and she better have enough left. They’re in the SW too–what dumb shits!

        OK, I could never be a neurologist, either. I get what your saying more or less (not well-versed in neurology), but in my simpleton mind, I see the larger ANS as being the part of the CNS that regulates everything we don’t think about it. If I suddenly can’t move my legs due to neurological reasons, that is not an ANS issue, as we control that–even if subconsciously. If I sweat too much (as we know), this is autonomic dysregulation in the simplest form, as I don’t think about sweating. Well, I do–like how to make it stop!

        I looked into the antibody you mentioned and found connections with dysautonomia via a presentation on Mayo’s site, which is big in EDS as you know. http://www.mayomedicallaboratories.com/articles/hottopics/transcripts/2011/02-auto-dys-eval/index.html
        When I first suspected EDS and saw that word, I thought that explained many of my odd ANS issues, but I don’t have those particular issues, so blaming father again for weird ANS crap (also thought he had Raynaud’s if you recall and I think is what you’re eluding to). This is where I think the doc effed up. If they don’t recognize that dysautonomia is a co-morbid condition of EDS, then they are barking up the wrong tree in neuro land and I think I first found the connection on Wiki–very scientific there.

        That’s what I gleaned from this mess you’re dealing with, but I also couldn’t zoom up those PDFs you put in your last post, so may be off here. I do think you ARE barking up the right tree btw and your photo (with blurred face) could be next to dysautonomia, which covers many of your symptoms, unless you’re saying you think this is more that that (sort of what I’m thinking)? I do believe it covers the total autonomic failure, though. Can you still see the very special specialist? I think he had the long wait if I recall? Again, if we could all see a damn EDS doc, we wouldn’t have to be pleading our cases. Are there really only a handful of docs who are interested in this disease?

        Well, it’s afternoon I think so better get to bed (isn’t circadian rhythm an ANS screw up, as well?). JC!

      • It could be EDS driving the ANS stuff. I think life long, that may be what was going on. But there’s nothing saying that you can’t get something else on top of it, and that’s what I’d like to rule out. The sudden worsening and onset of gastroparesis and anhidrosis (does it count as hypo if i sweat only when stressed/passing out?) after the really intense flu this February make a strong case for autoimmunity. Especially in light of my family history of autoimmune disease. And there’s a treatment for it. It’s not a great treatment, but there are two immunomodulating/suppressing therapies that can be used, along with plasmapheresis – I think to remove the offending antibodies from the blood. The prognosis without treatment isn’t great, you may spontaneously recover but you will not necessarily regain the function you lost while sick.

        I’m going to see my primary care to let him know how the last specialist appointment went, to strategize for the next one, and to see if he is interested in dropping a line to the head of the clinic where I saw the recently finished her fellowship not very special specialist. He may not want to to the last one, and I’m ok with that. If he does, and if it is not terribly received, I’d go see the head. If not, I’ll stick with bachelor number two (coming up in a little less than a month now). I’m also wondering about a referral to one of the big clinics…not sure if I should try for the EDS people or the ANS people. Basically, Mayo, Hopkins, or Vanderbilt depending on which way to go.

      • Hmmm. I have the autoimmune stuff as well: RA in EDS grandpa and then the lupus issue mentioned w/onset of EDS, then the vasculitis in ’10. The vasculitis, which I believe was viral due to an enlarged lymph node (huge!), seemed to set off the EDS from just being a pain/insomnia thing, so your theory holds water. In my case, I strongly believe it’s what has caused the crazy vascular issues, the congenital heart defect that never showed up before (congenital?), and maybe even the KC/eye issues, prolapses, mast cell-type allergies, more food intolerance, and so on–all post 2010. Rather odd that it all started right after the vasculitis hit–I mean within 1 mo.–and whether it was autoimmune and went into hibernation like the lupus or was viral, I’ll never know. I had + blood work if you recall and current doc thought I had some type of underlying autoimmune issue that can’t be detected in the tests available which makes me like EDS + X. Seems plausible to me, but he couldn’t find any studies on it and neither can I. New science, suffice to say.

        Well, I’m just glad you have a couple more resources in your area, plus your great PCP–mine’s a joke who does Botox and fillers like the rest out here and is good for a PAP–and that you have places to travel to. There is NO ONE here and I’m dead serious–I’m really like Moses and the gang just wandering in the damn desert for years and years waiting for a burning bush with a message. Lol!

        Per Mayo, I’ve heard mixed results on going there for EDS, so I haven’t (there are 2 locations as you may know) and chose to see a geneticist elsewhere that trained at Hopkins, which I still think is probably your best bet, unless you’re worried they’ll just say EDS and call it a day due to being in EDS Land. I have heard good things about Vanderbilt, but from the EDS side as I’ve never heard of anything that treats auto. dysfunction, only certain symptoms. Oh, that would really help me out with quite a few things, but no one here would have a clue and I heard the neuros are worse than the rheums, who are deplorable and mean, so I see a PM&R–actually the nurse, as she’s compassionate and is learning about EDS and they can’t do shit for me anyway. How sad is that!

        Sure hope you can get an answer…

      • PM&R is the next stop, if there is no detectable primary autonomic thing going on, I’m chalking it up to EDS gone wild. But this “just go get on a recumbent bike” is not gonna cut it. If this is “just” deconditioning, its the sort that needs some guidance better than a physical therapist to handle it.

        There are a lot of deserts. Connecticut was one too.

        Thanks for the info on Mayo/Hopkins/Vanderbilt. I need to know what people have heard.

      • Sure thing–I float around the web,. 🙂 It may be different in your area, but I’ve had PM&Rs since ’07 and they really just write scripts for PT, etc. I go b/c the rheums are a-holes and wouldn’t treat me when I was a fibro patient and the pain management docs are worse. I do think they are more compassionate docs–well the good ones–but can’t say I’m any better. Worth going, though. It’s the best fit for me with the myofascial pain, not that it’s better, either. Lol!

        Everyone says that about other deserts, but I need super dry heat (and below 10% humidity, which we only get for a few mos,) and it’s freezing up there and it has to snow in the winter, which means humidity. E. Wash is like that area I think. It’s totally different from Seattle as a mt. range divides the state. I really just want out of the States. I’m not a patriot and loved living abroad, but how can I with all my issues and meds and how to find docs, etc? I couldn’t go back to MX with the weather there, but I’d go to Mali at this point—civil war and all. I just forgot so much French. Crap. Where’s that Sheep? She’s away from the herd again. Lol! A wandering Sheep. I speak a little French with her. Well, hope you can figure something out until you see the big doc up there. I do get it: the need to leave no stone unturned. Look at me with the dumb misdiagnosis! My faith in the system is rather low to say the least. :/

  3. Good for you saying that to her! I hope you find some resolution. Medicine is so frustrating.

    Reply

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