The old standby...

I've been conducting the 'pretend nothing is wrong with your stomach' experiment with mixed success since last week.  I've been tracking everything that I eat and what it's been doing to me.  It has been very nice to just eat regular food again.  I've been self limiting my diet since October to try and get the symptoms under control.  It's been a bit painful, but thankfully everything is staying down with the medication.

Now, the interesting wrinkle.  I mentioned that I went to the ENT for the issues with dizziness that have been occurring for probably a month or so.  After he went poking around to examine stuff I noticed that my ears were really sore.  And it didn't really go away.  Instead, over the last week my right ear seemed to be getting worse.  I was hoping the exercises to get rid of the vertigo were just irritating something.  I'm not actually sure what triggered it but by Tuesday night I was in full on 'ready to shove an ice pick into my ear' pain mode.  Which typically means one thing.  Wednesday I got into see the new ENT, as the 'blood is coming out of my ear' part of the symptom list was enough to get an appointment midday. He confirmed that it appears to be infected.  Which struck everyone as odd, since nothing looked too awry last week. 

I have to wonder whether this has been brewing for a while now.  And if it has been, how much of my nausea has been because of that and not my stomach. 

I'm more than ready to be done with the ear pain, that's for sure.  Fingers crossed that more of my symptoms go away as the ear gets better.  That would be phenominal.

It’s all in my what now?

Ahh, so I went and met with the new GI doc at Georgetown today.  She disagrees with the previous diagnosis based on the test results that I have gotten so far.  She was also very upfront about the fact that my symptoms and test results don’t point toward any standard diagnosis that she can think of.  Oh yay?

Now for the best part (can you feel the sarcasm?)…   She thinks it might just all be in my head.  She backed up her position by telling me about how they get so many patients that have been through tons of doctors and tests and no one can figure out what is wrong.  So the stress of non-diagnosis fuels the symptoms which aren’t really being caused by an underlying condition. Just the stress. 

This is all fine and good, and yes, doctors look at my medical history and it’s all too convenient to assume that it’s psychological in nature.  Whatever.

I agreed to humor her and try to modify my behavior and attitude to pretend there’s nothing wrong for three weeks.  Then I go back to see her.  If it’s not any better it’s ‘back to the drawing board’ to try and figure out a diagnosis.

I would be happy if I can ultimately just act my way out of being symptomatic, but c’mon, I’m more than a little bit skeptical.  And for good reason.  Who wants to think that they are propagating their illness by worrying about said illness. 

I’ll concede that current stress is likely making my symptoms worse, but I’m still pretty sure there’s something wrong somewhere other than my head.

I also went to see the ENT today.  Hearing test says that the low frequency hearing loss is similar to my last test so that appears to be trauma related (duh) and not deteriorating.  Which is actually good news.

That and he also thinks my dizzy spells are positional and there are exercises I can do at home to help reset the floaty bits in my inner ear to reduce the cause.

He would have gotten five stars if he had been able to clean the tubes out.  Instead I got a bunch of yanking on things that have ultimately gotten stuck on the tube… in the eardrum.  Which equals lots of yanking on the eardrum.  I don’t suggest this to anyone.

Anyway, will be interesting to see what the neurologist has to say tomorrow and end this cycle of testing.

Professional Patient?

If there is such a thing, I'm certainly getting close.  I have appointments just about every day for the next week plus, with multiple days having multiple different appointments.

The highlights:

• I made an appt with a GI at Georgetown, I'm so friggin done with my current ones it isn't even funny.  I've never had a doctor basically wash their hands of me in the hospital before and hope it never happens again. Ugh.
• I found a new ENT (suggested by my neurologist) and have an appointment with him, plus a hearing test.
• I rescheduled the vascular ultrasound the neurologist wanted since I missed the original appt (yay hospital).
• MRI to look at my ears and brains (insert appropriate zombie jokes here)
• And regular appts with chiro, neuro follow up, etc...

Oh, and a molecular biology exam on Monday, just for some added fun. *smirks*

Change of tune

So maybe this is what I get for posting something slightly hopeful before I went to sleep Friday morning.  Because I didn’t sleep, I was up all night spending quality time with the porcelain god.  It started after dinner on Thursday and didn’t relent.  I called my family doc about noon on Friday and they suggested I head to urgent care to get some IV anti-nausea meds and fluid. 

I packed some stuff (just in case) and headed off to urgent care.  After they took their sweet time trying multiple times (in some very odd and painful places) to get an IV in they gave up and suggested I head to the ER.  I asked for my copay back, but that didn’t go over well. *smirks*  So much for using the ‘prudent’ route so I wouldn’t contribute to clogging up the ER.

Luckily it was a slow Friday afternoon and I didn’t have to wait.  Needless to say they got the IV access on the first shot, though it wasn’t the best one I’ve had.  It was sore the entire time and has left a nasty bruise on most of the back of my hand.

Finallly the IV meds and fluids started to come (have I mentioned that I’m still vomiting at this point?).  They suggest ANOTHER CT to rule out obstructions.  What the hell, I’m sure I glow in the dark by now.  By nothing less than a small miracle I kept down the contrast for the CT for precisely five minutes past the scan was complete.  Ugh.

They admitted me at some point Friday night and sent me up to the medical floor.  Saturday and Sunday were predominantly wait and see hoping that my system would calm down with continued electrolyte replacement and more meds.  The short answer, not really.

On Monday they decided to do an Upper GI series, which like everything else was normal.  Thankfully by Monday mid-morning I had finally stopped heaving.

No real resolution to anything after four days in the hospital.  My GI came by Monday afternoon and told me that they are pretty sure it’s gastroparesis even though the tests aren’t really validating that.  He then proceeded to tell me that there isn’t anything they can do for me really and suggested I eat smaller meals.  Um…. Wtf?

I’m still not feeling particularly well and am sleeping a lot.  I’m keeping some fluids down which is better than nothing.  I’ll be calling Hopkins tomorrow to see how long and what it will take to get in to see one of their guys.

Anyway, it’s very good timing for spring break to be this week since I’m falling apart.

Jen

New Specialists = New Diagnostic Tests = Moderately renewed hope in the system

I reserve the right to immediately lose any of said hope if the diagnostic tests all come back normal and the doctor(s) suddenly have no idea what to try next. *grins*

The less cryptic version…..

I went to see my neurologist this afternoon.  Went through the symptoms and diagnostic strike outs that lead to him being the next person on the list to try.  Also went through the stuff that I had seen him for a couple years ago (completely unrelated) to make sure there didn’t seem to be anything old still in play. 

At this point I guess I should mention that over the last couple weeks in addition to the usual symptoms, I’ve started having some annoying balance / dizziness type issues that make the nausea worse.  Things like looking down over a railing from the second floor and getting dizzy, looking in the side car mirrors while driving and getting dizzy, walking around a corner too fast and getting dizzy.  Not full on everything is spinning dizzy, mind you, but enough of a signal from my body that something isn’t quite right with really bad brain fog and I guess a lightheaded component to it.

He did a handful of observational things: looked in my ears, eyes and did the standard neurological quick tests.  Also did some positional testing which makes him think the dizziness is indeed positional which points toward my ears as potential culprits.

My rock star ENT is on vacation till May (wtf?) so I’ve been looking around for a new one till he gets back.  The neurologist had a suggestion so I will call them tomorrow and cross my fingers that they can see me reasonably soon.  So far from the calls I’ve made, 3 weeks out was the closest appointment.  In my world, that just doesn’t seem acceptable. 

So, I have a vascular ultrasound and a brain + IAC (internal auditory canals) MRI scheduled for next week.  With luck I’ll get in to see an ENT before my follow up with the neuro in two weeks. 

At this point I will actually be equally as thrilled to hear that my ears and brain are just fine as I would be to hear that someone finally figured out what the heck is making my body revolt.  And well, given my ear history it’s not entirely impossible that they could be messing up my stomach.  The MRI should also be able to make sure that I don’t have any recurrence of the wonderful infection I had a couple years ago.  My head isn’t on the verge of splitting into two, so I’m wagering on not an infection. Lol

Jen

GI Doc Weekly...

I had a sit down with my GI to discuss the results of the normal gastric emptying scan on Thursday.  From the last few visits, I was half expecting just to get blown off.  I didn’t really get blown off, but I also didn’t get a ton of warm fuzzies.  My GI still believes that a motility disorder is causing my issues, but that it’s likely either a stomach relaxation issue or it’s motility at some other point other than my stomach.  He also asserted that there are no tests available for testing those types of things.  So, his answer is to just treat the symptoms.  

I’m not a fan of that answer from ANY of my doctors…

In the short term his only suggestions were to double my Zofran dose and to try cutting out lactose to see if that helps with any of the abdominal issues.  Oh, and to come back in 6 weeks.

So, the current plan is to go see the neurologist and my ENT to see if there are any brain or ear issues that might be contributing to the picture.  If those are fine, then I’ll be in the market for another GI that specializes in motility stuff that can hopefully give me a better idea of what is (or isn’t) going on.

It’s been a very long week.