Discussions By Condition: I cannot get a diagnosis.

feel like my life is passing me by.. any help?

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: phipht5
  • March 17, 2008
  • 04:28 AM

I'm a 30 year old mother of 2 and have been dealing with some strange symptoms for several years and really need answers. I'll try to keep it as short as possible.

Since 2005 I have been having on on off severe lower and upper abdominal pain. Sometimes close to menstruation. Then one day in 2005 I had a Sudden onset of pain localized (about the size of a quarter) on top of head. Leg weakness in the following days. Went to ER and neurologist. Given MRI CT Scan and Spinal tap. No cause found. Throughout the following week was given morphine, vicodin, steroids with no pain relief. Given 600 mg Ibuprofen and received relief! That was 2 1/2
years ago and I have the pain everyday! I then spent af ew days in the hospital with abdominal pain with no findings and then followed by SEVERE chest pains.
Saw Cardiologist and said pain was not due to a heart problem. ECHO did show the leak and regurgitation with the valve. (I did have open heart when I was 15, but I have never felt pain that severe before)

I then started noticing tingling in my hands and feet (mainly toes) and cold feet.

I began having "episodes" that can sometimes last two weeks or more. These symptoms include - right abdominal pain. Sometimes intense, sometimes a dull pain that moves toward my side and back. Severe fatigue, diarrhea,chest pain, headaches, body aches, leg weakness, nausea , and pain with bowel movements. I become unable to do daily activities. And then slowly I get better and can go weeks without any symptom but the headache.

often these episodes coincided with my menstruation, but not always.

One time I was given fluids for dehydration. I had lost close to 15 pounds in about 3 weeks. (5'7 about 120 pounds.)

I need to figure this out! I went from running a marathon to at times being unable to walk to the bathroom. I was the mom who climbed the playground with her kids and now it's a task to even make them dinner.

I feel Dr's. look at me like I'm crazy when I start naming all the symptoms. The seem to want to treat or test for each individual symptom, but not the problem as a whole.

My GP seems to think Endometriosis but the gyn wasn't too impressed with my symptoms and told me come back in a year. I can't go another year of missing my life.

Here are the tests I've had.. all normal

CT Scan
Spinal Tap
Abdominal ultrasound
internal ultrasound
Physical Therapy (for tingling toes)

Ectopic pregnancy

My Biliruben was the only thing that has come back slightly elevated

Prior History includes; gal bladder removed, Open heart, and have had Migraines (with auras) since I was 5

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2 Replies:

  • You might consider getting checked for celiac disease. Another thing (less likely) to consider may be Hashimoto's Encephalopathy- diagnosed by thyroid antibodies, not hormones. Both celiac and HE can cause headaches and fatigue. Celiac would be more consistent with all your GI symptoms. You might also want to get checked for Lyme. I have HE and also have slightly elevated bilirubin (Gilbert's syndrome); and regurgitation on echo, but don't know if these three phenomena are connected in any way.Sorry you are having all these symptoms and no answer yet.Best Wishes
    Anonymous 42,789 Replies Flag this Response
  • Yes, this may be a long shot, but do check the THYROID. It effects every cell and system in the body and when it is off, a LOT of things go off. Elke mentioned a specific thryoid disease but general testing of the thryoid is probably good. Blood work for TSH, FT3 FT4 and the autoimmune diseases of the thryoid Graves and Hashimotos...and the one elke mentioned. Sorry you are feeling so poorly! Joan
    Joan5555 316 Replies Flag this Response
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