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LovesMyDunnBoy 10-02-2013 03:56 PM

Reaction to contrast? CT scan, swollen lymph glands
 
Some of you may have read in my previous posts about my health issues, but I'll summarize it again here.

I'm 17 years old. I'm diagnosed with hypothyroidism, and eosinophilic esophagitis, as well as tons of allergies to tons of fruit. The only exceptions are pinnapple, oranges, and grapefruit. (they make my esophagus burn and swell, other foods are always very slow to go down if I eat fruit first) I have lots of issues with nausea, heartburn, stomach pain (like I've been kicked in the stomach) for the last couple years, continually getting worse over the years. I also have migranes.

I had my gallbladder removed on July 11th, and so far all it's done is limit what I can eat even further. They removed it because my common bile duct was too small, I didn't have stones. I also get pain in my right kidney (I think, in my back area.) I also have had reoccuring UTIs.

I got a CT scan last Friday and it was miserable. She said I'd feel warm, etc. Once she injected the contrast (iodine) I felt like I had been set on fire inside my body. The celling (sp?) was spinning and warped (like a photo editer, stretching and pinching the image) and I was very sick to my stomach. I was close to tears because I felt like I was being smothered. I've had 3 MRIs and the first part of the CT scan was without contrast and I was fine. So I'm sure I wasn't just panicing. It passed, but I was still sick to my stomach the following day and I missed school. Has anyone else had iodine, and what was your experience?

The results showed that the lymph glands in my bowel were swollen. The doctor said it's usually caused by an infection (or in some cases cancer) and can cause stomach pain. He thought I might have had a stomach virus maybe. Well, that doesn't explain why my stomach has been hurting for at least 2 years, and even since surgery. I don't get it!
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aubie 10-02-2013 04:07 PM

I can't offer anything the doctors cant, but wanted you to know that was thinking of you. I went straight to my knees and prayed for you. I dont to it often, most would say not often enough, but your struggles moved me. I hope you find some relief from your symptoms, and take some comfort in knowing folks here from all over are thinking of you.

LovesMyDunnBoy 10-02-2013 04:17 PM

Quote:

Originally Posted by aubie (Post 3778186)
I can't offer anything the doctors cant, but wanted you to know that was thinking of you. I went straight to my knees and prayed for you. I dont to it often, most would say not often enough, but your struggles moved me. I hope you find some relief from your symptoms, and take some comfort in knowing folks here from all over are thinking of you.

Wow, this means so much to me! Thank you very much. I'm struggling lately with school because I feel so bad, and I'm planning on going to college to be a vet. I'm worried about being too sick to handle 8 more years of school. I feel like a hypochondriac because no real answers have been found yet I feel horrible. I really do appreciate this though!
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boots 10-03-2013 10:38 PM

I'll join with aubie in prayer for you.

But, I'd like to add to not panic over your reaction. There is no way know if part of the reaction, even getting a virus or bacterial infection is because of already having a weakened immune system before the contrast dye was introduced or what.

Keep on keeping on. Do what you can. One of my kids has cyclical vomiting syndrome and really struggles to maintain work and school (college). She's had to restart more than once, but knows that she'll make it.

LovesMyDunnBoy 10-04-2013 02:13 PM

Quote:

Originally Posted by boots (Post 3789154)
I'll join with aubie in prayer for you.

But, I'd like to add to not panic over your reaction. There is no way know if part of the reaction, even getting a virus or bacterial infection is because of already having a weakened immune system before the contrast dye was introduced or what.

Keep on keeping on. Do what you can. One of my kids has cyclical vomiting syndrome and really struggles to maintain work and school (college). She's had to restart more than once, but knows that she'll make it.

Thank you very much. That must be very difficult for her, I couldn't imagine. I'm probably getting another CT which I'm worried about (a few months from now) which I'm a bit worried about. But we'll see. I'm really working my butt off on the days I feel good, so I should be out of highschool by the end of October :)
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4horses 10-04-2013 03:12 PM

I think you need a full work up by a GI doctor. You could have mastocytosis or a mast cell disorder.

If your doctors can't treat you, go to a big hospital like Mayo clinic or John Hopkins.

If you are in chronic pain, this needs to be looked into further.

There is also a test for chronic enterovirus infections (the enterovirus foundation). But what you mention sounds more like a mast cell disorder than anything else.

Mayo Clinic Program for the Study of Mast Cell and Eosinophil Disorders

Endiku 10-04-2013 03:43 PM

Loves, I think whatever it is that we have (if indeed, they are correlated...) may play a part in that iodine reaction. I felt the same thing when I had my CT scan, and actually threw up because I felt so dizzy/hot from it. The doctors didn't seem to worried about it though. I'm sorry that happened!

Strange about the lymph glands though...I wonder why they're swollen. Have they already ruled out the cancer?

LovesMyDunnBoy 10-04-2013 11:12 PM

I'll look into those things. I have a GI doctor, along with an endocrinologist, a neurologist, and an allergist. They're okay, but I feel like they're just trying to satisfy me with these tests. I feel like they see me as a hypochondriac. My bone and joint doctor, he trys hard and really wants to know what's wrong with my hip, but these issues aren't exactly his area of expertise obviously.

Endiku, I'm fairly sure our issues are related. As far as the cancer, I've had blood tests done a lot and nothing has come back abnormal. But they weren't exactly looking for cancer either. My doctor didn't seem concerned, he thinks I just had a stomach virus. But he's also told me I don't need anything done about the Eosinophilic Esophagitis which I think I should be doing something about it? I'm glad someone had a reaction like me, I'm less worried. Although I'm not happy it made you sick!
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4horses 10-04-2013 11:55 PM

There are treatments for the eosinophilic esophagitis. I would look into them.

Have you had a gastric emptying test? Abnormal Gastric emptying can cause stomach pain (usually with weight loss).

MsLady 10-05-2013 12:13 AM

I am so sorry you are going through this and not feeling well. I will be adding you to my prayer list of fighters 😉, we all could use a little extra prayer here and there. Believe me I know, I have been struggling with Lupus(my immune system atacts my joints and nervous system) for 7 years and not always winning the fight, but I think I'm finally on a down hill fight now.
My husband was diagnosed with Hodgkin's lymphoma 2 years ago (cancer of the lymph nodes) one of the signs is enlarged lymph nodes on a CT scan or MRI. I don't tell you this to scare you or alarm you but to inform and educate you, it sounds like you are pretty sick and need all your bases covered. If your lymph nodes are swollen you need them biopsed.
Also he has to have a CT scan every 3 months to make sure the chemo and radiation did their job and the contrast makes him sick every time! He dreads it to a point that it causes him anexity.
Hang in there and know people are thinking and praying for you!
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