Got through

Got through yesterday.  I felt pretty bad, physically but did great emotionally.  My stomach was better too (so some support for the idea that the mirtazipine was a no go on account of unexpected stomach side effects), until I decided to slurp down too much soup all at once for dinner.  Yesterday was hot, hottest day we’ve had so far this season.  And my head was swimmy.  Dizzy, headachy, and the occasional blast of blue flickering flashes.  I think I spent the day with a mild migraine.

Well, I’ll take a mild migraine over a king sized freakout/meltdown.

Today, it’s therapy and primary care.

Tomorrow, my husband’s going out after work, so I’ll be alone all day and most of the evening.  That’ll be interesting.  If I’m feeling ok, I’ll try to go out.  Hard to plan to drive somewhere when you don’t know if you’re going to be too dizzy/migrainey though.  Once I have on migraine, the next is often right around the corner, especially in the summertime.  I have a friend who says he can come over for coffee Tuesday, so that’ll be a short interlude in an otherwise lonely day if I can’t get out.

This being physically sick was shitty enough.  Having the mental health stuff on top of it is just too much.

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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.

Number two

I don’t have high hopes for it, but I’m trying not to go into today’s appointment with a bad attitude.  That’s a fine line to walk.

Today’s appointment is with the second “very special specialist”.  The one who everyone says has no bedside manner.  Yep.  The turd.

My primary care wrote an amazing letter for me, so armed with that, tilt table test results, and gastric emptying study, off I go.  Wish me luck.

Down a quart

Had bloodwork yesterday.  This is bloodwork ordered by my PCP and when that man orders bloodwork, he does not mess around.

Anti-ganglionic antibodies and a host of immune tests…I think I got all the complements drawn, crazy shit the lab had to look up.  This is because you’re not supposed to get chronic mucosal thrush infections, apparently, with an intact immune system.  So we’ll see how this goes.

painful week

The weather has not been kind to me this week.  I really could use a little kindness.  Wednesday, something in my thigh pulled and my toe was desperately trying to break free of its proper alignment.  Yesterday, my right hip and pelvis decided to get in on the act, leaving me with pain here, pain there, pain pain pain.

So I hobble and limp around and wonder how long it will be before I am back to the cane.  If this weather keeps up, soon I think.  I recall that last Fall was bad too.  Must be the season change.

Hubby’s still sick.  Or sick again.  Bad GI stuff going on for him.  No idea what brought it on, but he and the toilet have been bffs since Monday.

And it’s busy time at work.  Not a good time to be sick, but what’s new.  I’m seeing my PCP next week to discuss how the not very special specialist appointment went, strategize on how to approach the next one, and possibly order the anti-acetylcholine receptor antibody that the last doc wouldn’t run.  Grrr.  And then it’s off to the ENT doc since the oral/nasal thrush came back last week….ah that reminds me, time for a fluconazole.  It’s helping, but I know this infection.  Usually, it has an initial response to fluconazole, then after about 5 days of waning it comes raging back.  We can add sinus pain to the pain list.

paging doctor, um…

Had to page my GI doc at Big Granddaddy of all BATHs three times this week to get a call back.  Who dropped the ball?  Well it depends who you ask.  The predominant answer seems to be “not me!”  A very stressful call with the BATH switchboard staff last night.  So much so that I DID break a stress/anger sweat, got dizzy and faint on the phone with GI doc after, then spent a half hour shaking.  Then hit a big wall and slept like I was drugged for nearly 12 hours.

Jeezus.

So in my attempts to get ahold of GI doc this week, after paging Tuesday and Thursday, on Friday I faxed a status report to her office with a “hey call me, Girl” note attached.  I use the fax as the last ditch effort.  I know they read the faxes.  For anyone who has a complex medical thing to discuss with their doctor, if your doc doesn’t use (at all or reliably) email, then feel free to steal this trick.  It works well, providing you don’t over-do it.

When we did talk, she told me that she got my note and thanked me for it.  I’m better able to express myself in writing, but the added bonus of having sent this is that this detailed one page statement of what’s up for me is now going into my medical record.

In the fax I sent to GI doc, in addition to her requested update on GI meds, diet, lower and upper GI symptoms, and weight, I included a paragraph called “referral”.  In it, I state that I want her assistance getting a referral to a very special specialist to assess for neuropathy.  Here’s what I wrote:

Referral:  I’d like to ask for your help in getting an appointment with a doctor who can evaluate for – and, if needed, treat – autonomic neuropathy.  I have a history of symptoms of autonomic dysfunction (fainting starting at 8 years old, an abnormal tilt table test in June 2010) which have increased slowly over time and which I am certain have worsened in the last 8 – 10 months.  Compared to this time last year, I have more dizziness, more episodes of very low blood pressure (80s/40s), and I recently discovered that I am not sweating much (sometimes at all) in hot environments.  I sweat last summer.  This summer, I ironed a shirt in a 95 degree room and didn’t break a drop of sweat.  I am using ice packs, spray bottles, and just purchased a cooling vest because I have been feeling dizzy, frequently near fainting, and having chest pain even while resting in the recent heat.  My primary care has expressed concern about causes for the gastroparesis, especially in the context of my other autonomic symptoms.  He would like me to see a neurologist who specializes in “inflammatory neuropathy”, “peripheral neuropathy” or autonomic dysfunction.  I would like to see someone at (Mega-multi-BATH network) for insurance reasons but my primary care is not very familiar with (MM-BATH) groups.  Do you recommend anyone and can you facilitate my getting an appointment?  I find that (MM-BATH), (Big Granddaddy of all BATHs) especially, is quicker and more efficient when processing “in house” referrals.

And so after she and I discussed the GI meds and symptoms follow up stuff, we turned out attention to the referral.  She agreed that this was a good idea and said she would be happy to help.  So yay!  This really is a big yay since the very special specialist I tried at BG-BATH was like “we require a referral, but if your referring doc is outside MM-BATH network, you need a note from the pope asking us to see you and why, then you wait 2 weeks while we mull it over, then we schedule you for next March.”  If the referring doc is in MM-BATH network, they just click a button on a computer screen and done.  GI doc said she’d email the very special specialist I wanted to try to see, so again, yay.

In the meantime, I’ll ask PCP to write up a note anyhow since he knows more about what’s up outside of the GI context although I think the gastroparesis plus the abnormal tilt test alone should be enough to win me a referral, I like to hedge my bets.  Doctors have taught me to do that.

I am not a toucan

It’s god damned hot again.  As a delightfully vulgar young woman puts it in this viral video, “it is ninety one thousand damned degrees”.  This video is not safe for work (come to think of it, neither is this blog so fuck it) but it is cathartic for those of us suffering in these back to back heat waves.

I have today off.  What to do?  Not much.  Painted my nails.  They are deliciously frosty looking now.

Two medical appointments yesterday.

First appointment:  Didn’t pass out on the “tilt-a-whirl” test, as one of my friends called it.  Did get damned tachycardic though, and damned hypotensive.  And sweaty.  The only time I can sweat now, it seems, is when I’m feeling the faint or in the middle of the night.  Asked how long to get results to my primary care.  This is very relevant since the way this lab/center at BI-BATH works is that you can’t even make an appointment to see the neuropathy doc until (a) you take a ride on the tilt-a-whirl; (b) you have an abnormal ride; (c) they send a report saying that to your referring doc; and (d) your referring doc says “yes, I do want you to see my patient for a consultation please”.  I already had one abnormal tilt-a-whirl test with these guys, but that’s too old apparently.  So how long is “about a week”?  And when I called two weeks ago to start this whole process, they told me the neuropathy doc was booking into October.  How far out will he be booking by the time we get to step (d)?  Simple math will not suffice here, btw.  This is not a simple additive equation.  There are too many variables which are deeply non-linear.  Fuckwidgety.

Second appointment:  PCP to talk about “not negative” results.  They weren’t kidding.  What I had was a screening for anti-neuronal antibodies which are associated with gastroparesis, i.e. autonomic neuropathy.  From what I can tell, these antibodies are prominently associated with paraneoplastic syndrome, meaning some people make them when their immune system confronts a couple of specific kinds of cancer.  Usually early cancer, but not always “good” cancer…like small cell lung cancer. Typically inoperable and a shitty, shitty prognosis.  I’ve spent some time looking to see if these antibodies are associated with other syndromes/causes, you know, NOT cancer.  Some, I think.  I don’t really understand the immunology stuff, and you combine immunology with autonomic neurology and I’m like “?”  Well, got to the appointment and got the results.  They weren’t kidding. They were not negative, but not positive.

  • Quest Anti-Hu AB screen by IFA, abnormal:  fluorescence noted.
    • Reflex Western Blot:  negative.
  • Quest Anti-RI AB screen by IFA, abnormal:  fluorescence noted.
    • Reflex Western Blot:  negative.

See, from what I can tell, the test is a two phase test.  Stage one is IFA, which I think means (?) Immunofluorescence Analysis.  I was positive for both on that, although I thought for those they gave titers, like “we diluted this shit x many times and we still saw something”.  Maybe that only works for ANA and not ANNA.  The next stage is a western blot test, if they see something on the IFA test.  I was negative for both antineuronal antibodies on the western blot.  But, even if I am interpreting that right, what the fuck does it mean clinically?  PCP doesn’t know.  He wants me to see someone who specializes in “inflammatory peripheral neuropathy” which is a fancy way of saying “a specialist who knows about what makes your body’s immune system attack your peripheral nervous system”.  Here’s my really limited breakdown of the results, which may not be correct:  A thing which binds Anti-Hu and Anti-Ri antibodies bound to something in my blood, but a thing which binds ONLY anti-Hu and anti-Ri antibodies did not bind to whatever is in my blood.  

So now we wait for someone to agree to see me before October.  Cheeeeerist.  And meanwhile, at work, HR has decided that we all need to dial back the AC because of the energy usage is too high.  They are sending emails left and right appealing to environmentalism, but I suspect its as much about money (if not more).  Will I go in to work to an 80 degree office?  Who knows?  Maybe.  I read that our HR director is asking building management to make “minor adjustments” to centralized building cooling, but that “Comfort should not be affected to a large degree.”

This is not about comfort for me.  It’s about safety.  To quote the “it’s hot as hell” star,  I did not sign up for this.  I am not tropical.  I’m not a damned toucan.

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.

locked

Woke up at about 1:00 AM last night on my side with my knees bent.  Ooh, that hurts, I thought, better roll over.  Tried to roll, but the knees weren’t having it.  Nope.  Had to manually, i.e. by arm, hand, and other muscles that really don’t like to do anything, roll onto my back then slowly unbend each leg.  It hurt like hell.  Hurt as bad as when I fell on the ice back in Michigan and blasted them to crap way back in 1998, when I still did thing like run in the snow.

What a thing to wake up to.

My knees had been feeling a bit cruddy earlier in the evening, not painful, just tight and weak.  Like my thighs weighed too much for them.  Noticed it going up and down the stairs. Felt like my knees were swollen.  They weren’t, not that I could notice.  With all this joint pain, I’ve nearly never had any actual joint swelling, which is why it’s is much more accurate to say I have arthralgia than arthritis, however, your every day coworker does not know what “arthralgia” means…and you’re looked at with suspicion for using big medical words.  So I usually just say “arthritis” now when I have to offer a functional explanation of my joint pain and dysfunction.  It is good to have the EDS-HT diagnosis for things like this now, at least in a more medical context.  It explains the algia without the inflammatory features of the itis.

One more work day then a day off.  Not totally “off” since I’m having bloodwork.  I had run across some references to anti-neuronal antibodies associated with autonomic dysfunction, specifically with GP.  These autoantibodies can come from cancer.  I’d been meaning to ask the GI doc about them but I knew that she’d probably think I was nuts for, well for what?  For looking for reason why a non-diabetic 42 year old without a history of spinal cord injury seemed to go from an accelerated GI tract to gastroparesis over just a few months?  Doesn’t sound so nutty when you spell it out, and yet I am 99% sure that had I asked her to check into this she’d have regarded me strangely…strangely in a way that compromises care. PCP was all kinds of “WTF?  You have gastroparesis?  They don’t know WHY you have gastroparesis?!  Before you take on some new thing, someone really should look into what caused this,” I did say that it could be the EDS and he ran off to his computer and printed out a long list of citations linking them (so much for that former GI doc who said there’s no association between EDS and GI stuff other than aneurysm – god she sucked).  But I’ve had EDS my whole life, if I do actually have it.  And this blisteringly symptomatic GP really is a new thing.  So I brought the question to him.  And so tomorrow AM I get bloodwork for anti-Hu and anti-Ri.

Dr. Potato head, or Tater Tot

Photoshopped pic of doctor made out of tater tots

My neurologist.

Ah, well that is one neurologist I will not be seeing again.  He has the bedside manner of a potato.

I saw my primary care later that day.  He mentioned something about autism.  “Oh speaking of autism, saw a new neurologist today…definitely on the spectrum.”  He could not interact WITH me at all.  Could talk TO, but not WITH.  At one point, when talking about visual symptoms, he said “those blue flashes aren’t migraine.  what does your eye doctor say about it?”  I say “well, I had an eye doctor who I saw when I started seeing star bursts around light points last summer, and I was going to follow up with him but he died.”  Tater Tot shook his head.  I said “What’s the head shake for?  He was really old!”  Oh yes, I did.

At least he didn’t come across like someone who is looking for a fight.  And he came across as so globally socially non-normal, that while I left there saying over and over to my husband “my GOD!  I mean, just….my GOD!”, I did not take it personally.

Primary care:  “Did he have anything to say about the migraine meds?” “Oh yeah.  He could talk to me just fine then, when he was delivering what was basically a lecture after he took my history. He even was able to call up his ‘smile subroutine’ at that point.”

So, Zomig for abortive med, he wanted to do verapamil for prophylaxis but that has bowel implications and my primary care was like “no!”  and he wants me to switch back to amitriptyline from nortriptyline.  I was to ask the GI doc about that, but she was like “hi/bye” during our phone check in this week.

Primary care is at the end of his rope here.  “Is there anyone you can see who knows about this shit?  I’ll take directions, I really will.”  Since I am showing a good number more and more severe autonomic dysfunction symptoms, primary care is sending me to the Best Itty-B.A.T.H. (i.e. “BI-BATH”) in Big Northeastern City.  BI-BATH is not in the mega-hospital network up here, but it is affiliated with Ye Olde Ivy League University Across the River and they have a “Center for Autonomic and Peripheral Nerve Disorders”.  I think it’s just one neurologist and a handful of post-docs, med students, and RAs, but hey whatever.  I’ll take it.  They did my tilt table test in 2010.  Primary care really wants me to go to Baltimore too, for the EDS.  “Ok but what is that going to do, I mean, I’m not saying no but if it’s just ‘yep, you have EDS’ (again), then what?  Do these people actually talk to each other, talk to you?”