I've been in an out of hospitals now for five months, or since february with a yet-to-be diagnosed condition that is not getting better. Every time I end up going to the hospital, I end up losing ground and my condition gets worse. Iâm 26 years old, five foot, ten inches tall and I weigh 212 pounds. I do not smoke, drink or do drugs. I have a mild case of asthma and have had surgery for a torn labrum in my left shoulder, lateral release on my right knee and three eye surgeries for strabismus.
Originally, back on january 9th, my primary care physician diagnosed me with mononucleosis. With the mono I have not had the typical case. Iâve had fatigue, weakness, chills (including low grade fevers), swollen lymph nodes and joint pain and almost all symptoms except throat related (strep throat) with the mononucleosis. On february 2nd, things changed a bit when I had severe upper left quadrant and flank pain that radiated down my side and into the back. I went to the emergency room where they did blood tests, urinalysis, ct scans and all looked normal for that visit. The pain was so severe that I had to take off two weeks of work afterwards due to its unpredictable nature.
For a few months afterwards the pain subsided enough so I could return to work where I work a sedentary job working in a call center for six to ten hours a day. On may 2nd I had severe right side pain that sent me to the hospital. They had determined that I had passed a kidney stone, but found no stones. They found blood in my urine and as the doctor released me said they were still finding blood in my urine. After being released, I proceeded to return to work. Despite trying to move on with my life the pain continued to get worse. I ended up going back to the emergency room on may 13th. At that time they just attributed the pain to irritable bowel syndrome, which I have, but the pain was not manifesting like my ibs typically does. With my ibs, usually relief of the pressure relieves the pain.
On may 18th, due to an episode of severe pain while at my doctorâs office, he directly admitted me to the hospital where I had stayed for six days. During that time they did a colonoscopy, egd, ct scans with and without contrast and even a series of mri scans on my lumbar, thoracic and cervical regions of my spine. In my lumbar region they found mild stenosis but not enough to account for the pain iâm still having. With every excursion to the hospital my condition worsens. I also seem to have a regular pattern to my visits. My first visit this year was to the emergency room on february 2nd, the second three months to the day was may 2nd where I had a four-day stay, then on the 13th of may to a different emergency room and on the 18th of may I stayed for six days as a result of my pcp directly admitting me. My most recent visit was early this morning on the 15th of june. With every stay and visit my condition worsens. After my may 18th visit, I essentially âlostâ the ability to sit up without the pain getting worse. My condition is not getting better, and my chronic pain is getting worse.
Here is a lost of my persistent symptoms:
Â· chronic/continued pain on the upper left and right quadrants of my abdomen, spreading down the sides (flank region) and into the back mid to lower back, with radiating pain into the left and right groin and down into legs with severe episodes.
Â· with each episode/excursion, the pain is worse then the previous attack.
Â· after my may 18th episode, lost ability to sit up with and without assistance where pain increases to intolerable levels.
Â· after the most recent episode, on june 15th, can hardly bend over without pain getting worse.
Â· low to moderate fevers
Â· drops in potassium, as found with blood tests.
Â· joint and muscle pain during episodes of severe pain.
Â· easily agitated, aggressive, during bouts of severe pain that send me to hospital.
Â· evidence of having past a kidney stone (may 2nd), with hydronephrosis (enlarged kidney) and blood in urine at that time.
Â· periodic burning when urinating, or in urethra while sitting and not urinating.
Â· sometimes a strong ammonia smell from urine.
Â· mild headaches.
Â· intense nausea when pain is severe.
Â· periodic vomiting when pain is severe.
Â· weight loss, despite regular or over-active appetite.
The frustrating part, despite the symptoms described, is all of the tests run come back negative or normal. The only thing that has been persistent is a slight elevation to my liver functions, which everyone says is normal. The only test that has shown anything was an x-ray done during my may 18th stay in the hospital where the x-ray technician said he saw a large kidney stone but two radiologists said it was just a gas bubble. The egd they ran found mild gastritis and a small hiatul hernia. My colonoscopy came back completely normal.
On the release of my may 18th stay in the hospital, I left with a temperature of 100 with an infection in my arms from iv sites. I was on cephalexin for fifteen days to combat the infection. More then anything I want to know what is wrong, or what I can do to resolve my condition. They have run a 24 hour urine collection for cystinuria (cysteine levels) and that came back normal. All tests they have run for my kidneys have been normal, as has most of my blood work.
Is there any help out there? Please, any suggestions or recommended tests would greatly be appreciated.
I was just wondering if you urinate a lot, or not at all. If all tests are clear, maybe looking into a form of long uti, like an e coli? Have they done these tests? I would like to know, and sorry if I can be of no help at all