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Post by Fayde on Dec 28, 2008 23:51:14 GMT -8
Thank you for keeping us up to date! That sounds like good news mostly, I hope they some results start popping up somewhere. I'm also very relieved to hear that it's been mostly stable for a while, although that episode yesterday sounds really scary.  I sure am glad you did get to eat before hand, but man... 2 hours after eating and still it dropped that low. It must have been really flippin' fast for you to loss so much function like that. I hope the see some answers soon and a course of action. We're still praying for you. Keep us informed! |
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Post by Waspman on Jan 26, 2009 12:43:06 GMT -8
I got my test results back. It showed nothing of significance and no one knows what's wrong with me! HELL YEAH!!  |
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Post by Fayde on Jan 26, 2009 14:41:32 GMT -8
My goodness they need to do some kind of autopsy or something! |
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Post by itsallgood on Jan 26, 2009 16:51:57 GMT -8
 What do you mean they don't know? Is there a tumor or no? What are they going to do now? Jay, you need to tell me more dude! Call me!!!! love you
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Post by Waspman on Jan 27, 2009 18:09:23 GMT -8
My Doctor thinks it's an insulinoma (tumor) just because my blood sugar's very erratic and that all of the excess insulin is coming from one area on the pancreas, which is what that one test they did (where they drugged me up and took blood samples from my pancreas) pointed out. They didn't see a tumor on the CT scan, but that doesn't necessarily mean I don't have one. Though, I'm starting to wonder if I even have an insulinoma.
As for what's going to happen now.. well, I dunno! I mean, I'm going to talk to the Doctor in like two weeks but I think chances are I'm probably just going to have to live with it and have CT scans done every couple of months and won't be able to do a d**n thing about it, pretty much.
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Post by Fayde on Jan 27, 2009 19:36:36 GMT -8
That is going to suck -_-
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Post by Waspman on Feb 13, 2009 14:39:00 GMT -8
UPDATE!!
If you really want to call it that. lol
I saw my Doctor. Asked me a whole bunch of questions like Doctors usually do. She wants me to get another scan done in 3 months, probably a MRI.
Also, do you guys know how I'll get all flushed sometimes? Like only my face and upper chest will get all splochey and red. It'll do it if I get emotional, or if I do exercise or sometimes just randomly.
Well, I did it while sitting in my Doctor's office and I kid you not, she freaked out. Even took pictures and what have you. Didn't completely understand why at the time, so I did some searching online for flushing as a symptom. And then I got a call today, and I pretty much knew what they were going to say.
Apparently they want an ultrasound done of my thyroid. I don't know very much about the thyroid but from my understanding one of the things it does is communicate via hormones with the pancreas. In what way, I have no idea. And some people with thyroid problems gets all flushed exactly like I do.
I've had it for pretty much all of my life though, and it's really just exploring one possibility of many.
Also, she also wants EVEN MORE BLOOD WORK done. God d**n, I swear I must've had every blood test in existence.
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Post by Waspman on Feb 13, 2009 15:11:26 GMT -8
But basically all they currently know after all these tests is that one particular area of the pancreas is making WAAAAAAAY too much insulin for COMPLETELY MYSTERIOUS reasons that have yet to actually be discovered.
Heck yeah, I should be on that Mystery Diagnosis program!
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Post by Fayde on Feb 16, 2009 1:48:47 GMT -8
... ... I don't even know what to say, other than this: -_- |
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Post by Waspman on Mar 10, 2009 15:57:33 GMT -8
Crapped.. I passed out again. Went to bed at 11 PM last night, woke up around 4 or 5 O' Clock PM.
Woke up sitting on the toilet which is usual when I'm passing out, also I was seating when I woke up. I checked my blood sugar and it was only at the 50s. I'm guessing it dropped and then the glucogon kicked in though. I'm so out of it right now, I can hardly even type.
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Post by Fayde on Mar 10, 2009 16:17:16 GMT -8
That is some scary crap, man! You need to get eating something! |
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Post by Waspman on Mar 11, 2009 13:19:36 GMT -8
It's weird. I had a hard time just spelling stuff.. Well, my Doctor's office called me. Just wanted to know if I had the ultrasound done yet. She made it sound REALLY weird though. Like HOLY CRAP YOU NEED THE ULTRASOUND ASAP kinda weird. Which makes me think that something weird came up in the blood work, that suggests that I might have a Thyroid tumor. Which makes me kinda worried that I have MEN-1 or something. |
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Post by Fayde on Mar 11, 2009 16:24:18 GMT -8
You know, my faith in your doctor has diminished beyond reasonable belief. Does she go home at night and think randomly after months and months "OH! I FORGOT TO TRY THAT!!" You would think there would be at least some kind of protocol when it comes to diagnosing these things?
I know when my heart thing started up, they knew almost right away what it was, cause they knew generally what they were dealing with, and they ran with it. No one just sat there guessing until they get it right... Stupid..
I hope that goes well for you though. Do you know when you'll have one?
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Post by Waspman on Mar 24, 2009 13:23:02 GMT -8
Well, from my understanding they did check my thyroid, along with my adrenal and pituitary glands while I was in the hospital. Nothing came up abnormal, so it's pretty much assumed that it must be an insulinoma. But the way I see it, they also didn't think I had severe hypoglycemia because at the time they ran bloodwork and it was in the 130s but had they taken it at the right time, they would've seen that I was running blood sugars in the 20s-50s. So take that, as you will.
As far as the newest labs, nothing abnormal came up other than the FRIGGIN' HUGE C-Peptide and Pro-Insulin levels. (reference range is 18.8 pmol/L or under, mine was 334.8 pmol/L. Which is actually lower than it's been, believe it or not.) But all of my Thyroid hormones were normal.
My Doctor also prescribed me Diazoxide. It's an insulin suppressant, usually prescribed to people with situations like mine. PROBLEM IS IT COSTS $980 FOR A 40 DAY SUPPLY.
$980 FOR A 40 DAY SUPPLY
$980 FOR A 40 DAY SUPPLY
$980 FOR A 40 DAY SUPPLY
$980 FOR A 40 DAY SUPPLY
$980 FOR A 40 DAY SUPPLY
$980 FOR A 40 DAY SUPPLY
$980 FOR A 40 DAY SUPPLY
$25 A PILL
GOD DANG IT
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Post by Fayde on Mar 24, 2009 21:20:38 GMT -8
Holy crap.... And I thought my 2-3 dollar a pill price was bad... JEZ!!!!!!!!!!!!!! That's rape.
Anyway, that's really frustrating about your situation. Holy cow it's like the doctors are throwing a coin in the air and saying "OH! It landed on heads, he must have &@!$#*!. THE COIN HAS MADE THE FINAL DECISION!!!! ALL HAIL THE FREAKING COIN!!!!!!!!!!!"
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I sure am glad you did get to eat before hand, but man... 2 hours after eating and still it dropped that low. It must have been really flippin' fast for you to loss so much function like that. I hope the see some answers soon and a course of action. We're still praying for you. Keep us informed! 
What do you mean they don't know? Is there a tumor or no? What are they going to do now? Jay, you need to tell me more dude! Call me!!!! love you