what’s up

Been a while since I’ve given a summary of what’s up medically these days.  So many scattered bits, hardly a narrative.

Doing a(nother) neuroendocrine tumor work up.  This time for carcinoid, not pheochromocytoma.  My understanding is that they are both types of neuroendocrine tumors which can be similar in effect but are not necessarily the same in things like what cells they originate from and where they tend to crop up.  The bloodwork was “within normal limits”.  Now I just need to be off caffeine long enough to to the 24 hour urine collection.  I’m saving that for post-scopes.

Having an upper endoscopy and colonoscopy on Monday.  “Can you do them both together?” I asked, half joking at the GI appointment in September.  Surprisingly, the answer was yes.  It is the one teeny bright spot in what is otherwise getting me way down.  I’ve only had two colonoscopies…or possibly one.  No, maybe two.  Anyhow, for someone with chronic diarrhea and weight loss, they do them and they do them more than once.  This is because things can be missed in one, because things that might not have been visible in one could grow or become more pronounced.  So off I go for another scope.  I HATE the prep.  Hate it deeply.  This time, I’m doing the horrible high volume PEG prep.  I do not like the PEG prep.  It starts tomorrow and as I’ve gotten closer to it, my mood has incrementally gotten more rotten.

Seeing a special mouth/oral diagnostics group in January for the recurring mouth thing…whatever the hell it is.  It sucks.  It’s painful, and my primary care and the GI doc both got a good look at it earlier this Fall and would like this checked out.  The dentist did too, and had been thinking of sending me to exactly the same group but (a) he latched on to the fact that I smoked and said it was probably just that and (b) it went away, as it does, so he decided it was all good.  Problem with it going away is that it doesn’t go away for good.  My money’s still on candida.  A search on erythematous candidiasis turns up images and descriptions that are quite similar to what I have.  If it is candida, it’s acting resistant to the usual remedies.  And a recurring, resistant, atypical candida infection suggests that my immune system is not as it should be.  I’m not on any immune suppressing drugs, I don’t have HIV, and although my antinuclear antibody tests routinely come back elevated (1:160), they are not so high that you’d jump up and yell “my god, it IS lupus!”

Dropped off my accommodation forms with my PCP.  This is for work accommodations, and quite honestly, some of them are silly.  Not silly as in frivolous, silly as in I shouldn’t have to ask for this as an accommodation, e.g. a lunch break without demands that I stop eating and work.

Chest pain is better finally, but holy crap, my arm still hurts from my flu shot.  It’s been WEEKS and I can’t move it up, across my body, or back (forward to a point is ok) without it absolutely killing.  Advil and heat help.  I’m supposed to check in next week to let the PCP know if it still hurts.  I like the RN who gave me the shot and feel bad I had to tell her that it screwed me up.  I’m assuming this is just a “oops we hit a part of your muscle that is testy” thing and hoping it will go away eventually.

So…following up with endocrine and GI in December.  Mouth appointment in early January.  I think that mid January would be a good time to do a “where have we been, where are we now, and where are we going?” appointment with my primary care.

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5 Comments

  1. Pop

     /  November 12, 2011

    You have my sympathies on the prep. They are going to ask me to do a colonoscopy too and I’m dreading it.

    Hope it goes better than expected.

    M

    Reply
    • Thanks POP. I’m hoping for the best, planning for the worst. You know how it goes. Got lots of prep for my prep…I’ve done this before so it’s not like it’s going to be a surprise. :/

      Reply
  2. I appreciate the update. Can you explain the tu or work-up? is it just other testing done with existing tissue? Does Neuroendocrine involve a neurologist? I apologize for my ignorance. It sounds like this should be urgent, no? Waiting until January to discuss things? I’m scared and concerned. And what about the colonoscopy and EGD – that talk needs to happen soon. What are they’d looking for? What doe th caffeine have to do with anything? Ugh, I want to help you.

    I’m so glad you are doing the ADA form as silly as it seems. It’s an underutilized tool and using it is like part of a grassroots movement or something as sadly as that is.

    Reply
    • Thanks Q. Scopes are Monday, follow up on them is in early December, so really just a few weeks from now. They are looking for evidence of IBD and cancer. Those are the biggies to rule out. They’ll take biopsies of anything that looks odd, maybe some non-odd looking stuff too just to get an idea how the tissue is.

      Neuroendocrine tumors – I should put in links. Here’s a decent one: http://www.cedars-sinai.edu/Patients/Programs-and-Services/Carcinoid-and-Neuroendocrine-Tumor-Program/

      You know how the urgent/non-urgent game of a mystery illness is played. It’ll be January before I know it, and there’s no rushing the tests. I’ve tried that route and it only leads to irritation, DDD (deep dark despair), and bad (or perhaps it’s better to say worse) medicine.

      Reply
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