Discussions By Condition: I cannot get a diagnosis.

Could somone help me...I'm sixteen and have been sick for 11 years(reposted)

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anonymous
  • November 10, 2008
  • 05:47 PM

Im 16 years old and I’ve fought symptoms for 11 years and new ones keep coming. It started with neck pain when I was five, then I went deaf in kindergarten(I was lip reading) due to fluid in my ears, I also had constant ear infections...when I got tubes put in my hearing came back. Then in garde two my neck froze in an upward position and mysteriously went down. Then I had constant strep infections and had to get my tonsils removed. After that I had non-stop bladder infections. The whole time I have had symptoms that continue to get worse including constant pain, racing heart rate, numbness, mood swings, weakness, sleeping difficultly, my legs feel like jello, I get shooting pain in my face, incontinence, low blood pressure, low body temperature, headaches, freezing hands, sun sensitivity and a strange feeling like when you wake up from surgery. I have been to urologists, arthritis clinic, neurologists, physiologists many other doctors and have had basically every test in the book. My thyroid has gone back and forth between hypo and hyper but when I saw the endo he said it was likely due to meds. I asked my doctors wether it was all in my head and he still insists on running tests...HELP! Anyone now what it could be...it feels like my life is being taken away from me:confused:

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4 Replies:

  • What tests have they run? Have any came back positive or abnormal? Where is the constant pain or does it move around? Does exercise make your symptoms worse better or about the same?
    qwertyuiop123 453 Replies
    • November 10, 2008
    • 08:02 PM
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  • Get checked for celiac disease. http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm
    aquila 1263 Replies
    • November 10, 2008
    • 08:12 PM
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  • Thank you for you replies...They have done MRI’s's, catscans, x-rays, E something(one is supposed to test for seizure the other for heart), exploratory bladder surgery, tons of blood tests, allergy testing, hearing tests. halter monitors etc.. The MRI’s were of my head and neck, the X-rays and cart scan were of my neck. I can't really remember the other tests. When I was young they did the allergy test and I reacted to everything but they said sometimes that just happens and put me on a special diet that did nothing, my TSH has fluctuated a lot, they found a calcification(spelling) that they can longer see, I have been told that I have poor coordination, my one side of my back is usually swollen and they said that I may just use that side more, my glands under my neck are often swollen, my body and blood pressure is usually low, I’m bipolar and have asthma associated with colds.. When I was first born I was in the special care nursery as a precaution after being born by c-section because of my mom’s high blood pressure, when I was there I stopped breathing temporarily, and was but on seizure meds for a few months. The pain is always in my neck but radiates to other places and I' never not in pain. Exercise is usually fine. Please keep the responses coming...I am desperate and I’m starting to think its in my head
    Anonymous 42789 Replies
    • November 11, 2008
    • 01:42 AM
    • 0
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  • Thank you for your replies....Tests they have ran:Brain MRICat scan, X-ray and MRI of upper neckE something(one to test for seizures the other for heart rate)Allergy testingexploratory bladder surgeryTons of Blood tests including TSH and thyroid antibodiesHearing testsArthritis testingsThings they have found:Calcification in the C2 c3 vertebraBipolarLow blood pressureAbnormal and fluctuating TSHOne side of my back is bigger the otherLow body temperatureExtremely fast heart rateI reacted to everything during allergy tests but the special diet they put me on did nothingPoor-coordinationI wear contactsWhen I was younger I was born by c-section due to my moms high blood pressure, well there I stopped breathing temporarily...I was put on seizure med for three months and they though it was no big deal. The pain in always in my neck but radiates everywhere. Exercise makes it about the same.Please keep the answers coming
    Anonymous 42789 Replies
    • November 11, 2008
    • 04:34 PM
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