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Old 12-26-2010, 02:09 PM   #1
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Exclamation Frustrated! Oh, where do i begin....

I'm 14 years old, and extremely frustrated, so are my parents. The last 6 years have been sorta miserable. Please take time to read this. I really want someone to talk to who is on the same boat as me.
About 6 years ago (in 4th grade) it started as a kinda embbarrasing thing, IBS. I left early, missed, or came in late to school alot. To this day i still get really bad stomach cramps and have to run to the bathroom. Not as bad now as it was then but still happens some. But that same year i also got into a pattern of tonsilitis exactly every 2 months. It wasnt too severe but i also caught every bug that went around so this added up to being a ton of missed school. The next year, in 5th grade, I still had the awful stomach problems and the tonsillitis was gradually increasing to maybe once a month. Again just barely got by because of so much missed school. By 6th grade the tonsillittis would be more than once a month sometimes as much as 3 times a month. In 7th grade i developed double vision. Eye doctor isnt too worried about it just gave me prism glasses (which dont help all that much anymore.) the tonsils swelled up so bad i couldnt breathe at night and i kept an infection that antibiotics wouldnt fix so i had surgery to take out the tonsils and adenoids.(the doctor found fungus balls in my tonsils whatever that means.) For a couple months after that i was infection free..until i had a spell for nearly a month where i would come home with terrible headaches, like the worst ones i've ever had. My mom got tired of me constantly coming home, running in my room, slamming the door, and literally screaming into my pillow until i fell asleep. Then after those stopped, i got a really bad sinus infection, there was staph in there. Since then i've had sinus infections constantly, i almost never go a month without being on antibiotics. Last year (8th grade) I missed 21 days of school, and was tardy or left early many more. The last couple infections ive had were some of the worst i've had, they went to my lungs so i had lung infection doubled with sinus so i would be taking Avelox. so over the course of a year i was on over 11 antibiotics, one of which was for an entire month.
On November 29th i had sinus surgery (all he could figure to do was sinuplasty and turbinate reduction). I havent had infection since then but now im having totally new problems. I have a spot in my neck that started hurting, basically i've been having a sharp pain in my gland that radiates to the back of my neck. The gland isnt swollen at all though. Its the right side of my neck and the right side of my face has been red. My ankles have been hurting, my whole body hurts, and im exhausted basically all the time now, and my hands are always tingling. Im always freezing when everyone else is just fine (this is strange for me because im hot blooded and always hot when im not sick) Through all thats happened the past couple years i've had dizziness problems and some blacking out. There were a couple incidents at school where i had to leave because i blacked out. Its usually when i stand up. I also have an undying thirst. I had my follow up from surgery the other day and the ENT said everything in my sinuses looks great now. My mom told them everything that im feeling. He said the sinuses are healing perfectly. Before he decided to go through with surgery he had told us we should go to a neurologist after this so i probably will soon whenever my mom gets a referral. Before we left, the doctor said "any questions?" I said "Just one..Why do i still feel like this?" he simply said "I dont know." So in his field im clear now.
I've been tested for thyroid problems, lupus, my blood pressure is fine, so is my sugar. My cycles dont affect any of this.
Does anyone have these same issues? I know this has been a long post. I also know there will be some people who look at this and say "shes just a kid, shes fabricating all this" But you would be wrong. I've been living with this for years and my parents are about to the end of there ropes. Im not in public school anymore.
It could be alot worse... this stuff isnt so terrible individually but its a little overwhelming and its been so long that i just want to be better.

also, for some strange reason the health department found i have protein and white blood cells in my urine but my kidney functions are normal.
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Old 12-26-2010, 02:23 PM   #2
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Re: Frustrated! Oh, where do i begin....

Pony Lover,

First of, let me assure you that there will be no one who will look at this post and think anything other than you are a very well spoken, well written, young woman who is going through a lot and seeking some support. That is exactly what we do here, no matter of age. In fact, I make a point to respond to our younger members, as I feel a special bond with teenagers, being a parent as well as remembering how tough that time in our lives can be.

In your case, struggling with the medical problems must be very frustrating. I wish I could offer you the answers you are looking for, but I am hoping that some of our other members will offer you the answers you are seeking. Meanwhile, I will offer you my support as I have been very ill for the last 7 years as well (strokes). I can relate to that, just from another cause. I will be reading along, and offering you best wishes for this to resolve.

 
Old 01-02-2011, 09:18 PM   #3
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Re: Frustrated! Oh, where do i begin....

I understand how frustrating it must be for you to be sick often and no one can figure out why or what..Do you still have IBS symptoms.? if so maybe you should also see a gastrologist..You might have Crohns or Colitus

 
Old 02-13-2011, 08:49 PM   #4
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Re: Frustrated! Oh, where do i begin....

Hi, since i made this post, there have been alot of developments...
yes i still have IBS symptoms btw.
Around christmas i was starting to feel a little better although i was still recovering from my sinus surgery in november. BUt then around new years eve, i got a really awful pain in my right side. It got worse about a week later, so my mom took me to the health department. They did labs which showed no elevated white blood count, and said that if it got worse to call and they would schedule KUB xrays. Two days later i was worse, so my mom called the practitioner who had seen me. She said to come see the doctor instead. The doctor sent me home saying nothing was wrong, to take advil.
I decided to try to wait it out but about 3 weeks later i begged my mom to get me an appointment somewhere else because it was progressively getting worse.
She switched my PCP to my dad's doctor, (im going to be going to him now.) At that time he was out of town so they got me an apptment with a different doctor. She ordered more labs and they did an ultrasound. The ultrasoun showed a tiny cyst on my left ovary. THey led my mom to believe this could cause terrible pain on the right side. She made an appointment with my new doctor anyway. Immediately, he said "theres no way that tiny cyst is causing this much pain from the right side." He thought it was my appendix and immediately sent us over to the hospital for a CT of my appendix. They did the enema (ewwwwww, ouchhhh). The doctor called later that day saying the appendix looked ok but he still wanted to take more steps to make sure it's not my appendix (especially when my mom told him how bad it hurt when the fluid from the enema hit the spot in me that i've been hurting at.) so the next morning, i had to give 4 more tubes of blood. All of that came back normal.
I went back to see him last week. He ordered a ct of the whole abdomen. The next day i had it with IV contrast.
A few days ago he called saying the appendix still looks ok but my spleen and liver are enlarged. So tommorrow im giving blood again (he's testing for mono...) On thursday i have a consult with a general surgeon to get his opinion. The doctor said they may need to look into seeing if its my gallbladder... My dad had his out 2 years ago. I guess gallbladder problems could run in families couldnt it?
Either way i just want this pain gone. For over a month, i've done close to nothing. Im homeschooled yet ive fallen behind, my horse outside hasnt gotten much attention from me at all, my friends barely see me anymore, and i've not left the house besides the hospital and doctors. Im hoping they just figure this out.
But, im trying not to complain and to just fight through all this (:
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Old 02-14-2011, 05:58 PM   #5
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Re: Frustrated! Oh, where do i begin....

You HAVE been thought so much with this, and by no means does it sound as if you are complaining a bit! We are here for whatever we can do to help, and if you need a place to rant, feel free.

You story reminds me of my own experiences with pelvic pain that stopped me in my tracks. I went though all the different doctors, and had all the tests, went through several diagnosises, and treatments that never worked. Finally the pain was so unbearable I was admitted to the hospital just for pain relief and hopefully the correct diagnosis. After 9 days, I was discharged without any diagnosis!

Finally my cardiologist had me see my OB/Gyn and within 15 minutes, she had the right answer! Endometriosis...Now I am not suggesting you have the same problem, but I would encourage you to have it ruled out. It does not show up on any regular imaging, and I have no idea why no one had thought of it, but since, I have learned that many women have gone through the same thing trying to figure it out.

Thank you so much for updating us on your news, and I hope you continue to keep us informed. What you are going through can help another, who may be experiencing similar symptoms. I am terribly sorry for all the pain, it is so draining of all your enthusiasm, and can be a very lonely place to be.

Feel free to drop in if you are ever feeling low, day or night. There will always be someone here to help you through the toughest times. I am very anxious to hear what the next step is, and deeply empathetic for what you are going through. Being in pain is awful, but it sounds as if you are well on your way to the proper diagnosis, then you can get the proper treatment, and regain your life once more.

The very best to you..

 
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Old 02-14-2011, 10:18 PM   #6
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Re: Frustrated! Oh, where do i begin....

Wow..... it sounds like you had a real time with it!
That reminds me.. my doctor had mentioned the possibility of endometriosis... how was yours diagnosed and how do they treat it?
I was tested for mono today. I havent heard the results yet. Im wondering if that could be a possibility because ive had so much issues with dizziness, lethargy, fatigue, and blacking out... but ive had those for years and from what ive heard mono only lasts for a few weeks? i guess we just have to see what that says.
I wish thursday would get here!! The surgeon im seeing has a great reputation around here... but the doctor told us himself he didnt see a reason that Dr Fox would do anything. somehow that disappoints me because they've done so many Cts, im sure if they were gonna find something through tests they would have by now. If it takes laporoscopy ill take it. Im so ready to get over all this! I have a ton of commitments that i have fallen on, but i can be an active normal teenager at this time. 2011 has really been a bummer so far since ive spent it in the recliner the whole time.
I'd like to thank you sooo much for being so supportive. It really helps to go through something when you have someone to listen to.
I'll keep you posted on every development as i find it out
Thanks sooo much! -sarah

UPDATE.
Test results from my test yesterday came back; i dont have mono. They still have no clue whats wrong.. so im anxious about my appointment thursday.

ANOTHER UPDATE.
I went to the general surgeon today. Im having a barium study to rule out Crohn's disease wednesday..

And another update now.
Barium study came back completely normal. Gallbladder test this wednesday. So sick of all this
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Last edited by PonyLover375; 02-28-2011 at 12:21 AM. Reason: new test results, doctor appt, more test results

 
Old 06-24-2011, 08:13 PM   #7
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Re: Frustrated! Oh, where do i begin....

Oh gosh. So much has happened.
i doubt anyone reads this, but if so;
to make a long story short, i had my appendix removed at the end of may. After 5 months they figured out i had appendicitis and i was lucky i had it out before it burst.
Now we're finally discovering answers...my doctor thinks i have POTS (a type of dysautonomia.) Im going to vanderbilt next month. the journey continues!
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