Discussions By Condition: I cannot get a diagnosis.

Just need some help....

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: pinksteelersfan
  • February 20, 2008
  • 04:45 PM

Ok... this can be a long story...so I'll make it short.

First off, some background.... I'm a 24 year old female that has never really felt good. How terrible is that? A 7 years ago - an orthopedic doctor diagnosed me with Ehlers-Danlos syndrome.... saw him a few weeks ago and said - no, that's not what this is.... what a quack!!!

I have had hip pain since waking up January 7th 2008 with no apparent cause. I have been to my PCP and a rheumatologist. My PCP said that if the pain worsened to go to the hospital. A few weeks ago that's just what I did.... spent 5 days and they found nothing. The orthopedic doctor I was admitted under said his diagnosis is illiotipcal band syndrome. Another orhthopedic dr said no.... I'm going crazy! Have an appointment at the Cleveland Clinic on Monday - that's where my rheumatologist said that I need to be seen.

These are my symptoms:

*Severe right hip pain
*Achy feeling all over
*Chronic sore throat (had strep 5 times last year)
*Passing out from pain (usually when standing)
*Frequent dislocations of hip, shoulders, elbows, etc.
*Temperature issues... One minute I'm freezing, next sweating..- but when I sweat I have poor circulation in hands and feet.
*I have a seizure disorder - being controlled by medication - going on 5 years.
*Nauseated
*Chronic Diarhhea

Also, I had my gallbladder removed and also had the laproscopic nissen fundoplication in 2006.



All bloodwork has come back negative - I've been tested for Lupus, Chrons Disease, Celiac Sprue, and my Rheumatoid Factor.... nothing has come back telling me what I have. Also, I've had an MRI and CT scan which has shown 2 slight bulging discs, but the dr does not think this is what is causing my hip pain. I've also had a bone scan while I was in the hospital, however all it showed was a few cracked ribs.

My rheumatologist has prescribed Vicodin, Methocarbamol, and Lodine to try to help with the pain. He got my an appointment with a rheumatologist and metabolic bone specialist in Cleveland on Monday - but I'm just at the end of my rope. I'm so afraid that he's not going to be able to help me either.

The current medications I am taking are: Vicodin, Methocarbamol, Lodine, Topamax (for seizures), and Depo Provera Injection (birth control.)

Can anyone give me a bit of insight? I'd greatly appreciate it.

Thanks!

Karie

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