Independent evidence

Of thrush infection.  My husband.  Last night he showed me his throat.  The whole right tonsil and arch in front of it were covered in white thrush-like blobs.  Poor guy.  So me, I get no blobs but I am STILL fighting off whatever (thrush) this is (thrush).  It seems to be in my sinuses.  Great.  Now I just have to convince someone of this.  Ah we don’t need this shit right now.  Not that anyone needs it ever, but this is a particularly bad time for me at work.  School’s about to start and I’m missing work because I’m too run down, in pain, and dizzy to be in the office right now.  Oh and did I mention the whacktastic trick my right eye has learned?  More on that later but it seems, according to the oldest opthamologist ever, that my right eye has a “slight clefting of the biologic lens”.  I.e. it’s on its way to cataract.  You have GOT to be kidding me.

hair band or oral surgeons?

I finally had my follow up appointment with the oral medicine department at one of the BATHs Friday.  This was the first time I was symptomatic when I had time off.  I’m glad I waited.  Punch biopsy of palate = a little painful.  I didn’t see the doc I’d seen in January, she’s on leave right now.  I got one of the other attendings, a decent seeming guy, very tall and with long hair.  And his senior resident, also very tall and with long hair.  And a dude they introduced as a “resident” but who I suspect is a fresh out of med school intern.  He did not have long hair – maybe you don’t get to grow it until year two.  My husband stayed in the room, and said at one point when senior resident and attending were bent over looking at my palate, all he could see was a curtain of hair.  LOL.

And so it’s off, the biopsy.  I asked about whether a metal allergy to the components of my amalgam fillings could be responsible for the mouth symptoms.  Well, maybe but we’d expect to see more redness closer to them.  We’ll see.  I asked if they would be able to see evidence of that in the specimen and the answer is yes, so that’s good.

“Perfect patient”

“I’m going to tell people you said that,” I told the Oral Medicine doctor who said it to me today.  I am sure she said it in jest, but I don’t think she realized just how funny it was since she lacks the context to appreciate the full irony.

Her reason for declaring me the perfect patient was that since this is an intermittent thing that comes and goes, I’ve started taking pictures of it.  And I brought those pictures, on the iPad…not the phone.  Which was good, because since it was an appointment at a teaching hospital (one of the local B.A.T.H.s), this meant the intern, med student, and ?resident? who I allowed in for the appointment didn’t have to strain their eyes to see the pictures.  I like my phone (did I mention I got a new phone for christmas?  An iPhone.  It’s neat.) but it’s not the best for more than personal use.

“Look at the red dots on the soft palate…” she instructed her charges as we scrolled through the pictures labeled “March 2011, severe”.  Ahh, the red dots.  Yes.  However, I personally found the two big ulcers on the hard palate much more compelling, but what do I know?

“Can you send me those pictures please?  The one of the blister too…” (October 2011, mild)  Yes.  And I can return when I am symptomatic for a biopsy.  Done and done.  And relatively quick and painless.  She wasn’t bad, interpersonally, not this time anyhow.

Say “aaaaaaaaa”

Off to see an oral medicine specialist today.  To say that I am not enthusiastic about this appointment is an understatement.  I am in fact so apprehensive that I couldn’t get to sleep last night (the chronic random leg pains and itchiness didn’t help but my wakefulness only spotlighted them – most nights I manage to drop off after only a few grunts of pain and scratch-irritation).

The referral came from my primary care, who says this person is the best to see for oral manifestations of systemic diseases – read as the best in the area, although this area has a lot of best in the fields so she may in fact be in that set.  However, he also mentioned that he does not find her personality to be pleasant.  My sense is that she is rather disagreeable.

Small wonder I couldn’t drop off.

So why go?  Because every couple of months, my mouth goes from feeling moderately sore and peely (sorry if this is TMI, this is a medical/patient experience blog so you gotta expect that now and then) to being ungodly painful with sores and blisters.  I have a history of “spontaneous” oral thrush – and don’t even try to give me an antibiotic without some nystatin swish and spit or troches.

After the last round failed to respond to candida treatment (clotrimazole troches AND over a week of Fluconazole), he said “and this is why we don’t treat YOU over the phone.  You’re too complicated.”  He also said he’d never seen mucosa this red, and that this didn’t look like thrush.  Or at least not like typical thrush.  My money’s still on thrush, just the kind that gets in deep.  Or an allergic reaction to my fillings (I have metal allergies…yeah, why did I let them put metal in my head then?  Because I’m stupid sometimes).  Or a combination of the two.  One of the dentists at my dental clinic wrote it off as nicotine stomatitis, which doesn’t look right in pattern or type of lesion, but also mentioned this same oral medicine specialist as a go to person before he had his big “TA DA!” diagnostic moment.

I’d post a picture, but I don’t want to gross anyone out.  I will be bringing the pictures with me – I have them from three different flare ups of this thing.  Because of course, now that I finally have the appointment, my mouth is not in its acute and awful state.

Wish me luck.

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.