Discussions By Condition: I cannot get a diagnosis.

Desperate For Help

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: YoungAndSuffering
  • August 21, 2007
  • 02:17 AM

This is going to be an incredibly long post so it’s probably not for the casual reader. I am a 22 year old male and I’ve been sick for four years now. Not one doctor has been able to figure out what is wrong with me. I have seen a Neurologist, a couple of Endocrinologists, a Physiatrist, a Rheumatologist, a Physical Therapist, several internists, several ENT’s, a couple of Gastroenterologists, a Urologist, a Nephrologist, a Cardiovascular Surgeon, a Psychiatrist, a Dermatologist, and a couple of Pain Management Doctors. I have also been to the Mayo Clinic twice and the Scripps Clinic once. If you think you can help me, please review my history carefully. You could literally save my life. Any thoughtful input is appreciated.

Here are the current symptoms:

Sharp scapular pain on the right side
Sharp lower back pain
Chest pain with bouts of faintness and inability to breathe
Had nasal surgery several months ago and still have not healed
Recurring tonsil stones
Nausea, empty pit in stomach that doesn’t feel better with eating, cramping, excessive flatulence
Weight Loss (2004: 163 lbs 2005: 139 lbs 2006: 135 lbs)
Inability to gain weight regardless of calorie intake (No eating disorder.)
Joints popping out of socket
Rashes on joints, intermittently severe; Raised red bumps with severe itching and burning; Itchy skin
Hematuria (intermittent); Varied from gross hematuria to microscopic hematuria
Extreme fatigue
Sharp, stabbing abdominal pain in upper left quadrant
Muscle twitches
Constant urge to urinate and difficulty maintaining stream of urine
Night sweats
Panic attacksHere is a list of current medications:
Medication Dosage (mg) Frequency

Soma 350mg 3x a day
Hydrocodone 10/500 4x a day
Kadian 30mg 2x a day
Albuterol Metered Dose As needed
Zyrtec-D One pill As needed
Xanax 1mg 1x at night
Provigil 200mg 1x a day
Baclofen 10mg ½-1 / night

And here is the story of how I got to this place:

Summer 2003

At the time, I would have considered myself healthy. I had started to grow out of my asthma that I’ve had since I was two. I was exercising regularly and eating healthy. There were several major stressors that happened at this point. My mother and I moved out of the house that I grew up in and moved across town. I graduated from high school. My serious girlfriend and I went on a trip to California and when I got back, I found out that my mom had had a nervous breakdown while I was gone. That’s when her serious health problems began. At the end of the summer, my girlfriend was going out of state for college. I found out that she had been cheating on me again, and I broke up with her.

Fall 2003

I started college. My eyesight up to this point had been perfect. I had never needed glasses or contacts. In my first semester, I was in a big lecture hall and I started to notice that I couldn’t read the board clearly. Everything was blurry. And then my right knee started to hurt. At first, it was just a small pain but it worsened as the weeks progressed. It got to the point where I could barely stand to have anything touching my knee. I couldn’t sleep at night because I couldn’t even rest my knee on the bed. I saw my primary care doctor and talked to her about it. Her response was to give me Cymbalta. Not only did it not do anything for the pain, but it made me feel even worse. I felt more depressed and completely zoned out. I was referred over to a Rheumatologist. I saw his PA and was given a physical exam. He had no idea what was causing the pain and gave me a prescription for Soma so I could sleep. I saw an Orthopedic Doctor who took an x-ray of that knee and said that everything looked fine. I started to lose weight.


Throughout 2004 I lost more and more weight despite the fact that I was eating constantly. I had started out at 163 lbs and was down to 139 lbs by the end of the year. The pain migrated from my knee to under my right scapula. My knee no longer hurt but the scapular pain grew worse and worse. I also started feeling pain in my lower back.

Spring 2005

In January, my mom gets sick and is hospitalized for four days. During this time, I start to urinate blood. It is not a little bit of blood, it is a toilet bowl full of red. I switched primary care doctors and got referred for many tests. In February, the blood in my urine is measured at 3+ and I am tested for Lyme Disease, which comes back negative.

March 2005

I have a CT Pelvis with and without contrast. The impressions are: 1) Unremarkable appearance and pelvis. 2) No enlarged lymph nodes seen within the pelvis. I also undergo a CT scan of my abdomen. The radiologist who read the film wrote in his report that he suspected I had a Bochdelak hernia that had enveloped a portion of my kidney. There are no other abnormalities detected. I also have an MRI of the upper arm to determine the cause of the scapular pain. There were no marrow or soft tissue abnormalities. No evidence of a rotator cuff tear. The biceps tendon is in normal location with no evidence of tear. No labral tear. I was referred to a Cardiovascular Surgeon to follow up on the possible Bochdelak hernia. He looked at the film and said that he didn’t see anything but he wanted to order a chest x-ray to get a better look.

April 2005

I undergo a PA and Lateral Chest X-Ray. The impressions are: 1) “No confluent infiltrate or pleural effusion or diaphragmatic mass or hernia.” 2) “4mm nodular density in the right upper lobe probably related to pulmonary vascularity end on rather than a nodule. It could reflect a calcified granuloma as it is fairly dense for its size.”

May 2005

My blood work shows a normal electrophoretic pattern. I am also tested for glomerular basement membrance, which comes back negative. I test negative for anti-neutrophil antibodies (ANCA). I test negative for Hepatitis C and B. A urinalysis reveals atypical urothelial cells and “microhematuria with bacteriuria and acute and chronic inflammation.” The comment says “The cytologic findings noted in this 19 year old male may be reactive (related to inflammation and/or infection, or other causes such as bladder trauma, vigorous physical activity, postsurgical trauma, calculus) or secondary to low-grade papillary neoplasm.” At the end of May, I have an MRI of the cervical spine. The results show that I have an unremarkable cervical spine with no marrow lesions. They also show that I have a “minor central bulge C5-6 with minimal thecal sac effacement.” There is no neural impingement. A few days later, I have an MRI of my abdomen with and without contrast. All of the internal organs are unremarkable and no diagnostic abnormality is found.

To Be Continued...

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