Discussions By Condition: I cannot get a diagnosis.

Half a decade of Being SICK

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: VerySickGirlCA
  • March 9, 2009
  • 00:50 AM

Hello. I am a very sick girl. I wake up every morning with these symptoms. I am very thin but I have always been that way. That is if I ever fall asleep. This has been happening for 5 years now. I'm 23. I really need help because I am struggling to find a diagnosis. I should not be this sick at such a young age. Thank you for reading. It is kind of long.

-severe abdominal pain (sharp pain right at the mark of the first abdomen both sides)
-severe aches/joint pain (neck pain, high back pain, shoulders, legs, hands)
-uncontrollable muscle and joint twitches: (right and left big toes, thumb, pinky, right and left quad and calf)
-Low Grade fever around 99.5
-Occasional migraines
-severe dehydration/thirst
-severe insomnia due to thirst/pain/hunger
-pain helped with ibuprofen and eating
-hot flashes
-inability to lie down
-dry eyes
-excessive sweating/fast pulse (due to fever?)
-blurry head

On August 31, 2008: ER trip due to severe leg weakenss
They ran all tests coinciding with that:
Chest Xray
Echo Cardiogram
Ultrasound of legs for blood clots
Blood Tests
Urine Test (Only thing that was weird was this: found protein in the urine)
Otherwise inconclusive sent home.

Been to Neurologist(1), Cardiologist(1), Gastroentorolgist (7), Rheumatologist(1 awhile ago before new symptoms)
Had another Echo, brain scan, MRI of Brain, MRI of abdomen awhile back
Camera test for small intestine, Abdoman Xray showed 3 kidneys duplicate right kidney.
3 colonoscopies (last one showed healthy colon)
2 endoscopies (both normal)
multiple blood tests for markers for all gastro things all were normal.

Doctors say:
Manage pain because they dont know what is causing it

Any ideas would be greatly appreciated. Doctors just seem to have given up on finding what is wrong. I'm a puzzle no one wants to solve. But this is my life and it is miserable.

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6 Replies:

  • So sorry to hear you're going through this, I'm in the same position :o Just a quick thought, have you every had a bone density/bone scan done? Sammy http://www.undiagnosedillness.org
    Anonymous 42789 Replies Flag this Response
  • Have your doctors tested you for lupus or lyme disease?
    Anonymous 42789 Replies Flag this Response
  • Thank you for replying so quickly. I have not had one of those scans done. That is a new idea. I am always grateful for those! :) I read your website. I am sorry you are in the same boat too.
    VerySickGirlCA 1 Replies Flag this Response
  • Good morning,Do you know colostrum? I think that could help you but I think, there is not firm which made this product in U.S.A. I am from Czech Republic (Middle Europe) so excuse my bad english please:). If you wanna try that, contact me on e-mail MoravecHaB@gmail.com
    Anonymous 42789 Replies Flag this Response
  • It sounds a little like CFIDS (chronic fatigue immune Deficiency syndrome) or fibromyalgia(tender points on muscles that cause pain). Read about all these symptoms here:http://www.cfids.org/about-cfids/symptoms.asp http://www.patientslikeme.com/fibromyalgia/community?gclid=CLeD7Y7AlpkCFRMUagodeCgQag Here they have a list of symptoms, ways to join support groups (including online), and possible treatment plans. Good luck
    Carrlexzi 36 Replies Flag this Response
  • See an endocrinologist.
    Anonymous 42789 Replies Flag this Response
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