Family Doc was a Bust

I went to see my family doctor this morning in the hopes that she would have some broader suggestions of diagnostics to run to try and figure out (or continue ruling out) what might be causing my body to malfunction.  Wishful thinking.

We went through my whole recent history again and she didn’t really have any suggestions.  I requested a couple tests, one of which she ordered and the others she didn’t see the point in.  At least I was coming up with potential diagnostics.  In the end, 95% of the bloodwork will be the same as the last time I went to see her with the addition of a diabetes test and one other test.  I expect both of the new tests to come back normal and it’s anyone’s guess what my thyroid will do since I’ve had one abnormal and one normal test this month.

I’m glad that the gastroparesis seems to be off the table with the emptying scan results but the prolonged lack of answers is still frustrating.  From the way the last appointment with him went, I’m not very optimistic that my GI will have any additional ideas when I see him later this week.

Holding out a shred of optimism for the neurologist visit at the end of next week, but we’ll see how it goes.

Gastric Emptying Scan was normal

I’m not sure that I’ve ever been this frustrated about having a normal test result.  I had hoped that this gastric emptying scan yesterday would finally show in some actual diagnostic way what is going awry inside my body.  Wishful thinking.  I called the GI and talked to the nurse this afternoon who informed me that my scan results were normal. 

It’s a good thing in the grand scheme if it actually means that my stomach is working more properly than previously suspected.  I have to wonder whether it was just a ‘good’ day.  Who knows.  I was symptomatic in the morning before I went for the scan.

So now back to the million dollar question.  Why am I friggin nauseous and exhausted every friggin day?

Someone pointed out earlier that the exhaustion is potentially linked (at least partly) to the fact that I’m likely not consuming enough calories.  Well, ok, I KNOW I’m not eating enough right now.  I’m experimenting with ways to increase my intake even while symptomatic.  Tonight was an enriched smoothie and soup. Should also help a little bit with the dehydration issues.

I guess the next step is to get in to see a neurologist and let my primary doc know that the gastro test looked normal.

Ok, enough for now.  Have to go study for a lovely molecular biology exam tomorrow.

Gastric Emptying Scan

Well, I just got home from my gastric emptying scan.  It was a little on the strange side, procedure wise, but mostly just boring and a little uncomfortable toward the end.  It took me forever to find the nuclear medicine department once I got to the hospital since Fairfax is so much bigger than Fair Oaks, but I did manage to make it there even a few minutes early (shocking, I know!). 

Once I got there and checked in, I had to wait a few minutes and then they brought me back to the scanner room.  I was then given a pair of latex gloves and my breakfast!  It appeared to be a couple microwaved egg whites and two pieces of toast.  Had I not been heaving since I got up it might have actually been halfway enjoyable.  I managed to get (and keep) it down for the scan though. Phew.

Oh, I’m told the latex gloves were just an imaging contamination issue, they didn’t want any of the radioisotopes on my hands or shirt since that would throw off the results.  Not because the eggs were going to turn me into the incredible hulk on contact.  A girl can only hope though.  :P 

Anyway, after I consumed their lovely breakfast all I had to do was lie in the detector for 90 minutes.  It started to get uncomfortable after an hour or so since you’re lying on the same sort of slab as when you go for a CT/MRI/ etc.  A few cat naps and a tv in view helped pass the time.

The tech didn’t give me any clues as to results, but it looked like there was still a good bit of density in the stomach that hadn’t filtered any lower yet.  So I’ll be calling the GI to get the results in a day or two.  Can’t wait to hear what gems of wisdom they have for me then.

Another week, more tests, no answers

I’m glad to say that all the domperidone is out of my system and I’m a whole lot less itchy, breathing is easier and the swelling seems to be gone.  Unfortunately my nausea has proportionally increased over the same time period. All my GI had to say about it was an apology that most people don’t have any adverse reactions to it and since we’ve tried that and Reglan there’s nothing else medication-wise he can suggest. Well, other than increasing my Zofran dose.

Now mind you… this is before I even have an actual diagnosis of what is causing my digestive issues. 

 

While I was at my GI’s office today I did ask him to write me an order for the gastric emptying scan and will hopefully get that done in the near future.  I’m hoping my local hospital will be able to do the scan since I know they have a nuclear medicine department.  And it would be nice to know if this is the beast I’m really dealing with, or if it’s not.

The highlight of the visit was when my GI suggested I go get a neurological eval in case the symptoms are coming from something in my brain.  I’m having trouble shaking the feeling that he is completely out of ideas and just trying to pawn me off onto another specialist. 

I’m trying to go back to a semi-solid diet but I’m finding it difficult.  Solid foods just taste better. 

So, no answers this week.  I’m disenchanted with my GI at the moment and very much hoping that the next week may hold more answers.

Fun with Domperidone (or something)

So, a couple weeks I posted about the Reglan fiasco in terms of trying to find a medication to help with the stomach motility.  I clearly lost that round.  A little over two weeks ago I started taking the domperidone which seemed to have some promise. 

Unfortunately it appears it just took a while to build up to a level of revolt in my bloodstream. 

It started with some random itching last Thursday afternoon, I figured I might be having a reaction to the detergent on the gowns at the radiology place I got the ultrasound at (ultrasound was normal, btw).  So I hopped in the shower when I got home thinking that would be it.

Not so much.  The itching turned into a big hive-y mess where I could barely reach it across my shoulders, neck, etc.  It was just lovely.  I did the usual ‘what am I allergic to’ rundown and the domperidone was the only new variable in the equation.  The detergent got ruled out as the itchies got progressively worse through Monday, when I finally got ahold of my GI’s nurse.  

They suggested that I stop taking it (really? *ahem*), and follow up as planned next week.  They also didn’t suggest anything for next steps, except ‘we like to see how you’re doing on the medication at the next visit’.  Umm…. Newsflash?  I just told you and we’re stopping it.  What’s next on your list without making me wait another week plus?  Yes, I’m not a happy camper about that part.

Back to the digestive enzymes and other supplements for now.  I’ve also found a new chiropractor in the area (well, an hour away) so fingers are crossed that helps things also.  

So, official score = GP meds: 2 – Me: 0

edited to add: Since stopping the domperidone I've noticed that my face is a little thinner and I've lost about five pounds. I believe it was causing a milder allergic reaction the whole time and contributing to swelling in multiple parts of my body.  Ack.

Jen

Fine line between ‘empowerd’ patient / hypochondriac / annoying whiner?

So, I’ve been thinking about this a lot lately. I have a distinct knack for getting nothing but more questions from most of the medical tests that I’ve had done since the surgery.  Well, I have also gotten some guesses from my GI and the scrunched up ‘This doesn’t make any sense’ look from my family doctor.  I’ll put those in the theory pile.  Don’t get me wrong, I’m very relieved that some of the recent tests have ruled out certain issues especially with my family history.

I know there is something not quite right going on in my body.  It is nice enough to tell me that every day.  It just hasn’t figured out how to leave me a nice, simple text message with the details of what is causing it to freak out.  Until said time where my internal organs become sentient and take over my smartphone I’m left to play the treat the symptoms and slowly figure out what to even test games. 

I am impatient, yes, but the multitude of doctor’s visits and still not being able to function for an entire normal day is really getting to me at the moment.  I’m starting another cycle of getting passed back and forth from my family doc and my GI.  I’m currently in a holding pattern with the family doc for a couple weeks until they redo some blood tests and even if those are still off it’s not really indicative of anything (wbc levels).  So it’s back to the GI.  In an effort to save time I called to see if they want to send me for any tests (hopefully the gastric emptying scan next) to get a more concrete picture of whether my symptoms are actually gastroparesis.  I’m waiting to hear back.  I don’t do waiting very well. 

I know from experience that it is easy to fall through the cracks if you’re either a) not currently exploding in some fashion, literally and b) not vigilant about following up with doctors and reminding them that they are in the middle of figuring out what’s wrong.  I don’t blame them, they’re crazy busy with a ton of people with the view that they should be priority number 1. 

Which gets me back to my point, where is the line between trying to facilitate diagnosis and care, versus just being an annoying whiner to everyone around you or being viewed as a hypochondriac as symptoms evolve and tests show things that the professionals don’t think is a big deal.  You know, like when a small part of your lung is collapsed in xrays and the doctors just shrug it off. 

Anyway, it’s been a grumpy and more recently, itchy week.