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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.

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12 Comments

  1. Oh, this is creepy and sorry for the delayed response. I’m going to be a cautious optimist here, though. I had no idea what you got tested for so I Googled it and found something else that might explain why they’re higher or weird or ? (not sure about the GP connection). I know you had Lyme and found this, even if it’s the PLS form. Maybe there’s still a connection as Lyme just does some weird stuff. I have some weird tick-born disease antibody (from when?) and who knows if that’s what my horrid pain is from (v. EDS). These things are just so strange. Try to not worry to death; easier said than done I know. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2897967/
    A x

    Reply
    • Yep. Read that with interest back in 2011 I think. I keep waiting for something to COME of it, you know, maybe all those “there’s no such thing as ‘chronic lyme’ and therefore anyone who had lyme and who is still sick after buttloads of antibiotics is just plain crazy” people to jump on board but for some reason they just aren’t picking up the ball here. I am left to conclude that they’re just a-holes. ;p

      I don’t love the idea of lyme having crushed my autonomic nervous system. Whatever it is, it’s ongoing since I am still losing function. I’ve done a fairly good job of putting this test out of my head though. Just kinda kicking around in there in the background. I think it’ll be tougher this weekend when I’m not working and don’t have the distractions.

      Reply
      • I believe that can happen. I worked with a woman here who had post-polio syndrome from polio as a child. Some infectious diseases are just that way. Well, it would be better than that article you posted, but let’s just hope this is a transient thing from EDS. I have no clue if it even is transient in EDS? I keep getting nausea mid-day (never get that!) and am now freaking out, but hoping it’s the new med, the stress, the weather–no clue. The med makes the most sense but why not after breakfast or dinner? Well, hoping for the best here for you… Sorry you have to wait so long. 😦

      • I always got nausea when my stomach was empty when I was having worse gastritis, or when my blood pressure was doing a 2 – 3 hours after food plummet. Now, I get nausea between meals when the food has sat for too long. 4 hrs after eating, apparently I’m still hanging on to quite a bit of food. No clue what that does to the rest of the upper GI. I know it’s not good for the acidity of your stomach and duodenum.

        Easy way to test the blood sugar, well easiest if not cheapest is to just test it. Otherwise, eat a hard candy or something (I prefer ricola).

        When was gastritis that was doing it, the nausea was much improved by eating and always came with a gnawing deep pain. With the gastroparesis, it’s the most aggressive nausea I have ever had, there is belching, heartburn, significant reflux, regurgitation, and chest pain. Oh and horrible taste in your mouth. Just awful.

        If it were me, I’d assume it was stress/gastritis and eat crackers or teddy grahams between meals, maybe up the dose of zantac or whateverprazole. Of course, I am such a shining example of how to deal with one’s gut….so perhaps you should do the OPPOSITE of what I would do.

      • No, what you’re saying makes sense and I have a Hx of ulcers/GERD (largely asymptomatic) and have hypoglycemia (get major shakes/sweaty and shove food in my mouth even though I’m not hungry), but this is RIGHT after I eat lunch (just a bowl of rice and some sauteed haricots verts or just rice if in a rush for an appt.). I’m fine after breakfast (puffed rice w/blueberries–only fruit I can eat aside for grapefruit but have to watch the acid). Ditto for dinner and snacks (repeat of the above–such a VAST diet). Had breakfast a couple hrs ago and am fine! I have no clue!

        My GI issues were always lower (aside from the spastic pyloric valve at age 13) and the crazy ulcers were probably from taking Anacin 4 x day with a predisposition from my dad’s side. I can’t take PPIs or H-2 blockers due to the anti-cholinergic side-effects now. Doesn’t feel like when I’ve had intermittent gastritis and get that gnawing feeling as there’s no pain (or sore throats, which is my only clue that I have GERD and then am stuck with crappy Tums). Well, I slept in 2 shifts last night (8 hrs!) and it’s less humid, so maybe it was just from pain/sleep deprivation which makes it worse. I was nauseous non-stop (and a barfing mess) when I first got sick and wasn’t on any meds. in Seattle. Just from pain and not sleeping probably added to it. Really hoping it wont happen today as I haven’t had lunch yet since I slept in. Yikes! Thx for the info…

      • I hope it passes. I hate that you have even one more thing right now. 😦

      • It didn’t happen yesterday! Woo hoo. So, it’s either from finally getting sleep and lower humidity (although I’ve dealt with this combo since AFTER going on meds) or it’s possibly a bad batch of my D3, which I think I started around the same time. I didn’t take it yesterday as a precaution and they’re capsules that have olive oil in them–could it be rancid or something? I think D3 is fat-soluble and that’s why it has oil in it. Not sure if I should tempt it or search for the receipt and just return it. Crap. :/ I don’t know how you can deal with the GP–nausea is my worst fear (aside from barfing). I feel so bad for you. 😦

      • The nausea is pretty rough. It’s not just a stomach sensation either. There’s a variety that I call “head nausea” that just makes you feel like someone hit you in the forehead with the broadside of a 2×4 and the reverberation of that impact resonates with your pukiness. It’s a truly ugly feeling.

      • I’m so sorry you’re dealing with this. I thought regular nausea was bad enough… 😦

      • I think it’s like pain. There’s a few different “flavors” if you’ll excuse the loaded word choice.

  1. results, 2 | Final Trick

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