Stopping Lyrica

Last night, I did not take the Lyrica.  I had been planning on doing that anyhow, but my GI doctor finally called me back late yesterday afternoon.  We discussed it.  I think the most convincing thing for her was the constipation the lyrica was causing.  Yeah, never mind the headaches, and daytime fatigue, nausea, and pre-syncope.

So I’m off that.  She asked me if I was adhering to a gastroparesis friendly diet.  Um, I had been.  Now I’m on a (low fat, low residue) liquid only diet, and I can barely tolerate that.  I sometimes wonder if she has a bit of early onset dementia, or maybe if she’s an alcoholic.  Or just can’t be bothered to chart, so that when she calls me back and has my record open in front of her (she always mentions it so I know she does), she could see things like what I said to her the last time we talked.

I re-explained that pain is not my most limiting GP symptom.  I explained that nausea is one but that the nausea comes only if I push past the other earlier (severe, limiting) symptoms of early satiety, bloating, reflux/regurgitation, and wicked heartburn.  She latched onto the heartburn.  “Have we done a Ph study on you?”

Uh, no.  No you haven’t.  And you haven’t done an endoscopy in over two years despite my symptoms getting worse even on 40 mg of Reglan a day, and despite the fact that I have new (as of last Fall) difficulties swallowing, which I reported and which you ignored.

Honestly though, if I’m going to change GI doctors soon, and I really hope I am, I’m not sure having my current GI do these studies is the best plan.  I’d rather have them done by someone better.

I woke up with no nausea today, which I am attributing to having not taken the Lyrica last night.  My bp is still a little low, and I still don’t know if that’s the lyrica or something else.  It’s confounded by all the fucking meds I’ve been put on (and subsequently, rapidly discontinued) in the last few weeks to deal with the side effects of the Reglan and the worsening GP symptoms after stopping the Reglan.  There was a little window last week where it was better, sometime between the mirtazipine/iberogast/beta blocker clearing my system and day two of the Lyrica.  Now, it’s dropping back into the low 70s in the evening, and I do very much feel like shit when it gets that low.  I know, I have a low BP at baseline anyhow, but not that low.  Here’s how my BP works.

  • Feeling good or stressed:  95-115/55-70
  • Feeling fatigued or easily fatigued:  85-95/48-55
  • Feeling ill, dizzy/lightheaded:  78-85/45-48
  • Feeling presyncopal:  <78/<45

This morning’s BP (several hour, a half liter of water, and one cup of coffee after waking) is 77/55 (hr 67).  Blurg.  I’m hoping this is a lingering effect of the Lyrica.  Tried researching hypotension as a possible side effect and all I got was the vaguely worded side effect of “blood pressure changes”.

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neuro today, gone tomorrow

I saw the new neurologist yesterday.  I saw him once before, this is someone who was trained in autonomic function and who has opened one of the only autonomic function labs at a hospital in my area.  Yesterday’s appointment was a follow up to talk about blood test results (negative) and where to go from here.  Oh and to let me know that he’s taking a leave for at least a year because his mother is sick.

Crap.

I liked him.

This is the second neurologist I’ve had since moving back to Big Historic City in 2009 who has left his practice.  He’s trying to do it right.  He says that the practice is going to try to find someone with autonomic dysfunction training to replace him and that he’ll be here until the end of April, asked me to check in by phone or email before then.

So what’s new from the appointment?  Other than “Good bye new neurologist?”  My bloodwork was negative for Antiganglionic acetycholine receptor antibodies and antineuronal antibodies.  That’s good, it means it’s unlikely that it’s cancer and less likely that it’s autoimmune autonomic ganglionopathy.  Then what is still on the table, Mr. Patient asked my soon to be former neurologist.  The most likely is the Ehlers-Danlos, other than that, there’s also mitochondrial disease – it’s hard to diagnose and not very treatable.  Well, better the devil I know, so I’m going with Ehlers-Danlos.

One interesting thing that did come of this appointment.  Sleep.  I don’t sleep well anymore, had a sleep study and I saw it as relatively useless since it just said what I knew going into it:  I don’t sleep well. I fall asleep but I wake up a lot, so much that it basically turns my night into a series of small naps rather than good, restful, sleep.  My soon to be former neuro said that he’d been trying to get the results of my sleep study but failing.  “Oh I can get you those” I say.  “They recommended a follow up study with a CPAP because I guess they say I might have upper airway resistance syndrome….whatever, I just wake up every night in the middle of the night drenched in sweat.  I doubt it’s gonna help that.”  Turns out that I am very wrong about this.  I should have realized, I don’t sweat.  Unless I’m passing out.  That should’ve been a clue that the waking up in sweat was something other than being overheated.  My soon to be former neurologist explained (and I won’t do it justice here, so pardon my paraphrasing):  when you have something like sleep apnea or upper airway resistance – they’re really kind of the same thing, just a little difference in the mechanism and severity – it can activate a sympathetic response (hence the sweating).  There’s also evidence that it can contribute to the development of cardiac arrhythmia.  Hands up, who just had two weeks of intense palpitations and a racing heart rate for no good reason?  Oooh, oooh, me!  I did.

Ok, to sum up, what he’s telling me is that the waking up drenched in sweat is probably caused by the airway obstruction rather than in addition to (which is what I thought), and that this potentially has much further reaching consequences than a bad night’s sleep.  I’ve done a bit of reading since the appointment, and it sounds like it’s a sort of “chicken or the egg” thing with regard to autonomic function too.  I.e. bad one makes for bad other, although which one comes first is up for grabs.  But maybe fixing the sleep could help with some of the autonomic function.  Gosh that’d be swell.

Now, I just need to get my ass into the sleep lab in the next week or two and maybe this will all have been worth something.

demystifying

I’ve decided that when I talk to healthy people about my illness, I’m going to start using MS as an analogy.  This is because most people have never heard of dysautonomia or Ehlers-Danlos, but they have heard of MS.  There are TV shows and movies with people who have MS.  They may even have a friend of a friend of a cousin who has it.

This is not scientifically sound at all.  But then human cognition isn’t really rational.  We like to think it is, but it’s not.  We are subject to many logical fallacies in our thinking, and have to train ourselves NOT to think like that.  I believe that this tendency is most apparent in our social thinking, and I suspect it is facilitated by if not exactly because we don’t tend to think about our social thinking.  How we “feel” about people is how we feel, not how we think.  We might sometimes use cognitive words to describe the states and decisions we make about people, but how much more common is it to discuss those in terms of feelings?

So when you’ve decided that it’s time to disclose your illness, you are left with the daunting task of breaking through ignorance and I think that one tool that can help is analogy – specifically, linking the disease to something that is familiar.  My hypothesis is that the more familiar a known disease entity is, it is more accepted it will be as valid.  Hence, “It’s like MS…” with the caveat of “except it’s specific to the part of my nervous system that controls my blood pressure, heart rate, sleeping, and eating. So I get dizzy and faint when I stand up for a while, I get really tired from doing very little, and there are a lot of things I can’t eat anymore.”  I don’t need to include “going to the bathroom” and “having sex” because really, they just don’t need to know that.  Well, the bathroom thing can be relevant if you’re trying to explain to a supervisor why you need frequent breaks or an altered work schedule, but I’m talking more about the less formal disclosures to coworkers who otherwise have no basis of understanding why you can’t come to “super fun lunch time” and think you’re just being snobby.

Special

“Can you order a special meal, like they do on the airlines?  when you fly?” This is what the HR rep asked me at a meeting this week when we were discussing difficulties I am having with the departmental dinner that I was ordered to attend.  Handily, I had printed out a two page listing of foods one can eat on the various stages of a gastroparesis diet, and it was sitting on my desk someplace.  “Oh, well, it’s really restrictive…my diet.  Hang on, I have it…”  And wow, you’d have thought I had just started unbuttoning my pants to moon her or something.  She literally reared back in her seat and exclaimed “No, oh no you don’t need to show me…”

Now, let’s take a moment here to go through all of the ways that this sucked.

  • Primarily, if I don’t NEED to show her, how about she trust me when I say that eating out is not gonna work for me without a shitload of hassle that is going to sap my resources for the next day?  How about letting me make that call?
  • I understand that HR is sensitive to “forced disclosure” but this was not forced.  Well, except by her presumption that I can’t make a reliable judgement about what I can and can’t do given the intrinsic resources I possess and the external resources that my employer makes available to me (i.e. hard to plan whether you need to haul a heavy bag of food around Ye Olde Historic City when the people planning the event can’t tell you even what time it starts let alone what’s on the menu).  This was, given the conversation, me CHOOSING to try to educate her.  And her acting like I just did something shameful.  Nice.
  • The assumption that I fly, that I go out to restaurants on my own time.  And not just assuming, but hanging on to this assumption despite my telling her that I am very very limited in my capacities to get out and do things.  Did she just think that I was conveniently unable to do “social” stuff or travel for work?

Really, the first one was the kicker.  It underlies all the other problems I had with that, delineable and not.  I have my own personal struggle with whether to educate or not, most often at work but sometimes with the few friends I have left and family.  Needing to explain to my brother recently that no, I can’t go out to brunch with him because it would be an exercise in frustration and martyrdom for me to sit at a table while everyone else ate yummy food and I nibbled on a piece of dry toast.  He knows what’s up.  And still.  I struggle with whether or not to do it because I am, by my nature, an advocate and an educator.  I explain things.  Sometimes too much.  Woe be to the workstudy student who asks me what a word means.  I’m old enough now to not (usually) launch into a lecture on etymology and usage and to ask “How detailed an answer do you want?” before I go there.  I am the same way with the health stuff.  I have given quite a few impromptu lectures now on autonomic function (which I barely understand – but which my understanding of significantly surpasses what is possessed by most people without dysautonomia).  And yet, despite educating and offering this information, I see little change in the people I offer them to.  This is where the struggle comes in, and this is where I am likely to get pissed off.  I dislike disclosing to people there is no need to, and I dislike when I disclose and discuss with people and they fail to incorporate the knowledge into action.  E.g. “super fun lunch time” invite I got from my boss recently.  I KNOW I have discussed my functional limitations with her as they pertain to work activities.  Can’t stand up for long without getting faint; walking is fatiguing and sometimes very painful; can’t tolerate hot environments without risking passing out; can’t eat much and since I don’t know how food I didn’t make was prepared, really shouldn’t eat it unless I want to find out the hard way that it had too much fat or fiber or some other gut slowing ingredient; can’t delay eating or my blood sugar drops.  And yet, here’s the invite for our office to go (walk 3/4 mile) a tourist packed, overheated food court.  “Super Fun” indeed.  It is everything I can’t do.  Walking crowded city streets with ice and snow and a sizeable number of stairs on the shortest path; wandering around inside the food court, dodging clueless hunger crazed tourists; food I can’t eat; nowhere to sit; nowhere to put my coat and bag (and I would have a bag, for my water, my meds, and my food that I can eat).

So here’s someone I’ve educated and who has done nothing with that information.  Nothing useful at least.  And it puts me in an awkward position of having to say “no” to my boss, who is not good with being said “no” to.  And that is why I do struggle with the disclosures.  But that is my struggle.  I don’t need to add to that with attitude like the HR rep’s.

23 and me and them

I got a “23 and me” kit for my birthday from my husband, the sweet man.  He got one for him too.  For me, it’s a chance to find out a little more about my ancestry, since my mother was adopted and although she found her birth mother when I was a teen, her birth mother is not reliable on matters pertaining to her birth father.  My mother contacted her birth mother A. shortly before A. was about to move to the Southwest.  My mother went to see A. at some big family get together, she went alone.  I don’t recall whether there was discussion about any of us coming.  She came home glowing, with a long rope of a pearl necklace in a leather bag and a black and white picture of two distant looking people in long coats at a beach wall.  There were dramatic stories of how she was given the necklace by A., my mother dramatizes everything.  And there was the story of the picture, which was A. and the man A. said was my mother’s father, Mr. Coffee.  From Ireland.  “Mr. Coffee?  Are you kidding?  And also, “We’re fucking Irish?”

We’d gone through early school years in an Irish-heavy area.  Each St. Patrick’s day, it was a tradition in my elementary school to hang up construction paper shamrocks with the kids names, but with an “O'” put in front of the last name.  There was a sizeable number of “O’Italiano” names up there, mine being one of them, along with the “O’McGowan”s.  Sure, we knew that our grandma on our dad’s side had an Irish dad, but in a city where kids whose claim to being Irish came with parents with brogues, siblings back in Ireland, and weekly step dancing lessons, having a granny who is half Irish barely counts.  Plus, the Italian really just kind of overwhelms when you’re from a half Italian family, as my dad was.  So hearing in adolescence that our mother’s father was also not just half Irish but “Straight off the boat (and straight back on again apparently)” Irish was a strange counterpoint to all those childhood years of being “not Irish” when being Irish was really important.

But then the years went by and A. got older and stranger.  Not too many years ago, A. saw my brother at a visit.  During a phone call with my mother shortly after the visit, she said “You know, looking at (your son) now that he’s grown up, I’m not so sure Mr. Coffee was your father, because (your son) looks just like that guy from the party, you know, what’s his name, Chico’s friend….”

So this is a chance to find out.  Is it Mr. Coffee or is it “Chico’s friend”?  Not that this will say definitively, but if it’s Mr. Coffee, then presumably Western European  is going to represent strongly since the rest of my family tree is relatively well known, although A. herself is something of a mystery, one side traces back to Mayflower days but there is one reference to a “french canadian” great grand something and where I grew up “french canadian” was also what old fashioned, up tight WASPy people said when their WASPy New England family bloodline held some Native American.

And speaking of surprises…the second very special specialist was not bad.  One of the things he said was “I am wondering if you have a form Riley Day syndrome, it’s more common in people of Ashkenazi ancestry but…”  So I told him “Not Jewish, that I know of but my mother was adopted and we really don’t know anything about her father” and my husband chimes in with “But we’re doing that 23 and me thing”.  And to my surprise, the doc was actually enthusiastic about that.  Really, I was truly surprised because I thought “oh god he’s gonna think ‘crazy hypochondriacs!’ if he hears that we just did that”  He seemed to truly think about what might be up with me, and yes, that glorious letter that my primary care wrote helped, a ton.

Also helpful, I think, is that my husband got his work ID badge redone.  He works at Big Daddy BATH, and had originally started as affiliated with psychiatry, although what he does has nothing to do with psychiatry.  Now, his affiliation is more appropriately Neurology, so he got his badge redone to reflect that, and it reads “Mr. Patient PhD, Neurology, Granddaddy of all BATHS”  He should have added “bow to me ye mortals” to the tag too.

I do not have an answer, or a treatment plan. I  do have a very famous doctor who promised to look up some more stuff that fits what’s up with me, who said he would make his recommendations for screening and testing to either of two Autonomic specialists I wanted to go to with his referral, who said “Your primary care is right, EDS can cause some of this, but – and I’m embarrassed to say this – I don’t know how much,” who did not blow off the autoimmune stuff at all, who said that what my hands and feet do sounds like erythromelalgia (he’s the first person other than me who has said that), who discussed the possible diagnoses that he thought fit at first glance and what the treatment options would be for them.  And who thinks 23 and me is cool.   Not bad.  I’m seeing someone else, oh yes, the march continues, in December.  At least, December is when I’m on the schedule.  I will be a pest and try to get in sooner.  And I will definitely bring Mr. Patient, PhD and his magical ID badge with me.

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.

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.

damned if you don’t

I’m in another pickle at work.  My long awaited very special specialist appointment is Monday.  Monday also happens to be the ONE day all summer that absence will be exceptionally remarkable, because Monday is “Staff Retreat Day”!  An exciting several hours of hearing about how each department is soooooo busy and about what exciting student development programs and employee participation programs we can all get involved in.  I won’t say much more about that other than there are very few employee participations that I can participate in these days, much to my and my employer’s (rather differently based) consternation.

The staff retreat is only a half day, for a change.  Great news!  Um, no.  Because the half day that it occurs in is the same half of the day that the very special specialist is available to see me.  I have an appointment at the shockingly early time of 8:00 with the doc I’m calling The Runner Up.  She is the one I am seeing because none of the three “bachelors” I was trying to get in to are available until the Fall.  She is also, I’m told, very pregnant.  I’m told this incidentally by the scheduler at the Autonomic center at BI-BATH, “That’s the last day before her maternity leave”.  Oh.  Good.  So I get the runner up who will be high tailing it out of there after my appointment.  Uh, who’s gonna do follow up?

I’m trying to see it as a foot in the door.  As someone to order the damned bloodwork that will, hopefully, shed some light on whether my body is attacking itself for no good reason (chronic autoimmune disease) or for a good reason (cancer provoked autoimmunity).  Either one is a rarity, however I fit the symptoms and presentation to a T and have several history factors which make either a strong contender.  Lucky me.  So someone needs to look into it.  Either has a bad prognosis.  But they do have treatment options, all of which get less good in terms of halting the progress or recovery of function the longer you wait while your body destroys parts of your autonomic nervous system.

You can see why I am hesitant to wait another week let alone month or season on this.

Here’s the pickle though.  I told my boss about this and her comment was “(big boss) isn’t going to like it.”  Yes, I know that.  Thank you for the news flash.  But see, the reason I was telling you was that I want to know how to approach getting permission to go to this without it being a big red mark on my record.  No help from boss.  I explain about the cancer thing.  Ah, ok, now she says “You should go to the appointment.”  Right.  My thinking exactly, but still no help on what I’m asking about.  So I say “Would it help if I talked to (big boss)?”  Boss’s response?  “Maybe….”

Jeeeeeeeeeeeeeeeeeeesus.

I had been waiting in the hope that a cancellation would come through.  I’ve called the very pregnant very special specialist’s office three times in two weeks to nag them about me.  Sympathy, but no movement on the appointment.  Which leaves me now back where I started, do I talk to Big Boss about this.  I had been trying to be deferential to (immediate) boss’s authority and judgement but I think that she’s essentially abdicated her responsibility here, which leaves it up to me.  I think I’m going to do it.  If immediate boss is to be believed, Big Boss has been a source of some of the more problematic elements of accommodating my illness at work so maybe this can be a good thing.  So that’s on deck this week.  That, rescheduled meetings I’m not looking forward to, a GYN appointment to discuss my having turned into a wet nurse, and well just all kinds of fun.

asymmetry

A word I can never spell without checking.

It’s a relevant word right now because since I’ve started paying attention to it, I’ve noticed some strange things about my sweating pattern.  Today’s discovery:  asymmetrical sweating.  I am currently sweating on the right, but not the left.  Uh…I’m pretty sure that’s not how I used to do it.  I distinctly recall scrubbing out sweat stains on some of my shirts, and stains on both sides.  Maybe I’ve always been right dominant?  Dunno.  But today’s peculiarity makes me wonder if I can join A at Playing the Hand in her circus act.

On the plus side, I no longer have to use antiperspirant.  I can get by with deodorant only and stay nice and dry.  And there’s this lovely grey silk shirt I own which I had to retire from my wardrobe last year due to its ability to highlight even the smallest drop of sweat…breaking that lady out now since I can wear it with relative impunity (relative because if I get stressed, angry, or upset, the faucets start running).  Down side?  Have you ever tried to find deodorant that is not also antiperspirant AND which doesn’t have aloe and/or “ocean fresh man musk” scent?  Difficult doesn’t even begin to describe it.  I’m getting by with some kind of new age “crystal” mineral deodorant right now.  Works ok, doesn’t make me itch like aloe would, and I don’t smell like a 1970s man whore.

results

With a chronic, mystery/rare illness, you get used to negative results.   Especially in the early stages, and of course you know that “early stages” can span years.  A 2010 paper in the Journal of Neurology puts the median time from onset of first symptoms to diagnosis of multiple sclerosis at 24.9 months.  A 2006 article in the Journal of Rheumatology gives a mean time to diagnosis of 2.4 years for Scleroderma.  So you get used to hearing “your bloodwork was normal…” over and over.  Often, this news is delivered by phone, and I do appreciate that, often.  Not always. When you’re not one of the “worried well”, a negative test does not mean “whew!” it means “Well ruled that out I guess.  Now what?”

I had bloodwork done about two weeks ago for antineuronal/antineural antibodies.  The reason I asked for  this test is two-fold:

  1. My primary care had been beside himself with my GI doc’s apparent acceptance that my body just does gastroparesis now.  “That doesn’t happen just like that, not unless you were poisoned or something.”  I explained to the PCP that I have had some symptoms, like early satiety, pain after eating, nausea, pantoprazole refractory heartburn…all for a while, all of which I minimized or explained away.  Nausea?  Migraines.  Early fullness and abdominal pain after eating?  Don’t eat enough because of the lower gut triggering effects and my stomach shrunk.  Pantoprazole not helping with the heartburn?  Must have eaten something bad, better take it easy for a few days, no chocolate or tomato.  I’m very good at minimizing and explaining.  Also, I pointed out to PCP, GI crap goes with EDS and with what I can only loosely called “autonomic fuckery”.  So I was sort of primed to accept the GI doc’s apparent resignation about not digging around for addressable causes for this.  Not happy about it, but not really ready to take it on.  Not then.  Still numb.  But now it’s been a few months.  Now I’ve been eating a liquid diet for a while and I’ve lost a lot of weight and any deviation from this diet plus reglan brings the severe symptoms raging right back.  Now, I’m kind of ready to ask “wtf?”
  2. Back in April when first researching gastroparesis, I found a reference or two that paraneoplastic syndromes from certain cancers can cause it.  After the PCP kinda freaked out in June, I looked this association back up and found quite a few references to it (e.g., this paper, “Small cell lung cancer with positive anti-Hu antibodies presenting as gastroparesis“).  I should mention that I had actually initially thought of asking the GI doc for a blood test back in May, but again, see the end of (1) above for why I didn’t.  But since PCP wanted to look for causes, I took this to him.

That brings us up to the bloodwork, which my PCP ordered after I brought my request for it to him, and which I had drawn on June 26.  I’ve found that immunology stuff usually takes at least a week, this was really the first chance to check in on it. So I called today, left a message, expected phone call back saying all was normal.  Instead, I got the RN telling me “we got your labs back but I can’t explain it, he says he wants to see you.”  Soonest I can get in is next Wednesday, the same day I’m having my tilt table test and a day before the inlaws arrive (oh yes, the inlaws are coming).

Well this is going to be a tough week to get through.  Hoping a PET scan is not in my future.