We Found Something… Oh Wait, It’s Nothing.

When you have spent what feels like a lifetime searching for answers, you would know exactly what I mean by Results Day almost always being a let down.

You walk into the appointment with more fatigue, than hope.
Occasionally the Doctor surprises you with a “we found something!“, but that Something just turns out to be your body playing a trick on you.
That Something will disappear on the followup test, or it won’t be as bad as they initially thought.
The Something actually turns out to be one giant Nothing, and you fall back to square one.
All of the excitement your Doctor just experienced, turns into a “You might want to consider seeing a Psychologist

I’ve done it before.
I have walked out of appointments, swearing I will never return, never have another test, never have another soul-draining conversation with a Doctor or Specialist.
But you and I also know that as much as we despise it, we go on because we have to.
We will always choose health over being unhealthy.
We will always want that one answer, that one management strategy, that one medication that keeps are symptoms at bay.

So, we do have hope.
But our little piece of hope is sealed in a box,
inside a giant vault,
buried in the ground,
with cement covering it.

It is the last piece we have left.
If we can’t get to it, it won’t break, but we know it is still there… hidden.

I have not heard “news” about my health in months. It was a diagnosis of a rare stomach condition, and then a lot of confusion as to why I was not responding to medication, and why my symptoms worsened rather than eased. I was told that there would be no more tests, that we had to learn to manage the unmanagable.

And all of this time I sat there thinking, you have missed something.

Well it turns out that they did miss something.

My recent bloodwork from last week showed an increase in my Amylase (Pancreas Levels). My levels had not been normal since July 2014.
I was tested four times from then until now, and they slowly rose from a normal rate of 50, to 88, to 110, and now at 125.
But nobody pointed it out, and I am unsure of why.
The top of the sheet says “abnormal” in big, bold letters.
Not hard to notice, darling.

As I am petite, don’t drink, don’t smoke, eat incredibly healthy, apparently the “we better keep an eye on this” should have begun around the 88 point mark which was last year when I was recovering from the Shingles Virus.

I worry that Doctors are becoming lazier with patients of Chronic Illness.
We request more tests, and maybe they honestly believe that it is “all in our minds” so they just take a quick glance over our results, instead of being more thorough.

So, it’s off for another Ultrasound and a Gastroscopy this weekend to get to the bottom of this Something they have found. My Doctor explained briefly that IF my Pancreas is inflamed, it could be causing my usual Gastroparesis symptoms to flare. Apparently Pancreas problems also cause nausea, stomach cramping, trouble digesting and pain.

Nobody predicts the Pancreas.

But if I’m being entirely honest, I doubt it is something as simple as my Pancreas being inflamed. It sounds too… easy. I don’t want to get too excited, because if I do and am let down, I fear that it may be the end of my sanity.

But here’s hoping that this Something is actually a Something.

Advertisements

43 comments

  1. OMG, thank you for mentioning that! Good info… I’ve had these same symptoms, and I just get angry nausea meds, and an IBS diagnosis. But, during my echo, the tech said something about my places looking a little off (he saw it in one of the angles of my heart). Now I know another way to pursue this.
    I always hate Results Day too. Here’s hoping this Something becomes a major solution for you! And if it isn’t the entire Something that it will at least be a big enough party that it can give you some relief!

    Liked by 1 person

    1. I have been told the same thing and am struggling to find a medication that helps any of my symptoms. Meanwhile, I suffer in pain daily (as I can imagine you do too). The stomach/bowels are extremely tricky. Fingers crossed that we both receive better news! Will definitely be keeping everyone posted on the outcome xx

      Like

  2. Ah the return of a toehold for hope. It’s irrepressible isn’t it? My latest one is blood tests for allergies. It’s hard not to hang your hat on it, I realise my family does to.
    I truely do hope this leads somewhere positive 😊

    Liked by 1 person

  3. I know how frustrating it can be not having a diagnosis, having normal blood work and in so many words, being told by physicians it is all in your head. It breaks my heart that you are having to go through this. Sending lots of love your way and wishing you will receive some answers very soon! xo ❤

    Liked by 1 person

  4. What your physicians have put you through is inexcusable. I’ve been reading your posts, and it seems like your doctors are actively screwing things up on purpose. At best, they’re poor specimens of modern medicine.

    Eventually, after all is said and done, you might want to consider reporting your physicians to your local medical certification agencies. Just keep track of everything they tell you. And if what’s wrong with you is something that they discovered a while ago but just overlooked, then I say it’s quite alright to do what you can to make sure everyone knows how awful those people are.

    Bad doctors thrive on people just accepting what they say without complaint. If these people are hurting you with their diminished medical skills, then chances are they are hurting others too.

    Hang in there. Have your friend take you to the beach, do whatever needs to be done. I want to see you beat these people and your illness.

    Liked by 1 person

    1. Thank you so much. I am thankful to them most days, for taking me under their wing, but some days are a little harder. When things like this happen. The world needs better doctors – ones who are not pushed for time and who care.
      Thank you for your support!

      Liked by 1 person

  5. I was diagnosed with Gastroenteritis when in fact my pancreas had failed completely and I had become Type 1 diabetic. I only had to travel over 6000 miles to find that out though…

    Like

      1. Only takes a pinprick and five seconds to get the results on a blood glucose meter. Standard equipment in any doctors surgery. Doesn’t hurt to check! Apart from the pinprick obviously… 😉

        Liked by 1 person

      2. That’s the test for insulin resistance I think or possibly Type 2 as well. They’re similar but not exclusive. Type 1 can only be treated by insulin injection where the other two van be controlled with diet, pills and exercise. All debilitating or fatal if not treated though. A quick BG test is always good though but not straight after eating as the results can be misleading. Another test is called a HABcd1 which tests your average blood sugar over a three month period from just one sample. Results can be had quickly in hospital but longer if a GP has to send it off for analysis.

        Like

  6. It’s seriously disgusting that they ignored this. Amylase is on generic blood work and the pancreas is an OBVIOUS thing to check first given your symptoms and the ease of disgnosis. However, i believe your right that your illness is not only from your pancreas, but it’s a major clue to the course of your condition. I bet you’re right on when you say that it’s been overlooked because they didn’t think there was a real problem. I’m sorry girl, but if you want help researching some differential diagnoses let me know 😊

    Liked by 1 person

    1. Oh honey. I am suffering so much at the moment and don’t even know what to do/who to call. No point going to hospital because they will send me straight home. My doctor can’t help me. I just don’t know what to do. It feels like the beginning all over again, meanwhile my mind is screaming THEY HAVE MISSED SOMETHING. I am so, so over it all. The pain is just neverending. I have an ultrasound thursday and a gastroscopy saturday but I fear I will not last that long.

      Like

      1. Hang in there. I know that’s easier said then done. The pancreas test is the key to your answers, I’m sure of it. I had done research on it because mine was low for so long and they kept ignoring it. Let me look through what I have. May take a couple days, though. In the meantime, rest as best as you can given the pain.

        Liked by 1 person

      2. Thank you. I can’t do much else except rest. I want to get back to my life but it seems like there is no end in sight for me anytime soon. I’m anxious about the pancreas.
        Thank you for your endless support. I’ll keep you updated. Ps I am yet to read your latest post. I have just been too sick to focus. Will do so today hopefully xxx

        Liked by 1 person

      3. Couple questions, because I was looking at a few things for ya. Do you still have your gallbladder and appendix? Have they tested either of them, your thyroid, your adrenal glands or your kidneys?

        Like

      4. You are the sweetest.
        No appendix.
        Gallbladder, yes, but it has been checked on numerous ultrasounds and appears a-okay.
        Adrenal and kidneys have been checked. All fine.
        Thyroid… it fluctuates, but not enough for it to be a “problem” in their eyes. My results come back as normal, but it does jump up and down a lot.
        In the test with the pancreas news, it came back as midrange, which I guess is normal

        Like

      5. No vomiting for a few weeks now but a bit of both. I have horrible reflux. Absolutely horrible. It is bitter and definitely bile, and it burns my entire chest cavity and upper oesophagus… Not to mention leaves a bad taste in my mouth!!!
        I am hoping the gastroscopy will show something in regards to the reflux 😦

        Liked by 1 person

  7. all my fingers and toes are crossed wishing and praying they find something from this something. Love you lots ❤ 🙂 xoxoxoxo

    Like

  8. Hmm…If you haven’t had a HIDAscan, might be worth doing. My doc ordered one on a hunch and I failed it so miserably they called all the docs in to come look. I was 29 at the time. No gallstones, perfect ultrasound, DEAD GB with 0 function.

    Either way – I do hope this is the path out of the maze!

    Like

      1. It’s a gallbladder function test – using contrast – to see if it’s emptying and doing whatever gallbladders do….you basically get an injection and lie on a table for a while. It was essential in finding my GB issue as there were no stones (and I was in my 20s so it wasn’t suspect)

        Like

      2. Ah see I might have an issue in suggesting this test. I have had so much radiation in me from tests this year – my doctors are hesitant to do anymore. They think they are causing more harm than good.
        But it is worthwhile suggesting, especially if this pancreas thing turns out to he nonexistent! Thank you honey xx

        Liked by 1 person

  9. How did testing go? I’ve actually come across a few things, but of course sometimes too many. I know the obvious symptoms you’ve mentioned about your abdominal pain and nausea related stuff, but I may need more details to narrow it down further. Of course, only if you want me to. Like I said, I’m researching some things for myself anyway and I just picked up some new medical school books at the thrift store haha. You can email symptoms/abnormal tests/etc. since it’s more private (undiagnosedwarrior@gmail.com) if you’re up for it.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s