undiagnosed weakness, pain, nausea, dizziness

[Insane Mom]

My 18 y.o. daughter became ill shortly after her 16th birthday.  She continues to have a sed rate of 33, C reactive protein of 15.1, very high rennin levels, high seratonin and high aldosterone levels.  Her other blood and urine tests were normal.  Her TSH is normal and MRI's, CT's and a octreotide scan were all negative.  Yet, she has intense head pain, nausea every time she eats, dizziness, fatigue and feels "washed out" most of the time.  Last week her blood pressure dropped to 80/35 but rebounded with the addition of salt tablets.  Her team of doctors said they had run all the tests they could think to run and had been unable to come up with a diagnosis.  They had considered carcinoid tumors but the octreotide scan was negative.  Since there has been an inflammatory process on-going for almost 2 years does anyone think a PET scan would be valuable? reasonable?  She is declining very rapidly now and I do not think she will live much longer if something is not done.  They finally relented and gave her 30 Lortab for the head pain but only after she had suffered a long time without anything for pain except OTC Tylenol.  She also has intense pain in the kidney/adrenal area.  The orthopod said it was not musculo-skeletal pain but all the others believe it is because no stone or infection turned up on the MRI's and CT's.  Please help. What can I do?  The infectious disease MD who headed her team says it is not diagnosable therefore can't be treated. I just can't come to terms with that.  What can I do?

[NoAspartame]

My B/P routinely dropped to the 80/40 range and I would get <i>crushing</i> headaches along with dizziness, confusion, and I was extremely tired... often passing out frequently.  I was taken to the hospital on a number of occassions, many tests were run, and all came back 'normal'.  This went on for over seven years and four doctors were unable to diagnose me.  The low B/P situation was quite confusing... and dangerous as the kidneys are especially vulnerable to low B/P.

I finally figured out the problem was aspartame in my diet.  It took me another two years to figure out where all of it was in my diet.  The confusion from the low blood pressure was tremendous, and it rendered me functionally illiterate and made it nearly impossible to think most of the time.

Aspartame is found in roughly 6,000 products including diet pop, low-fat yogurt, almost all chewing gum, many childrens' chewable vitamins, OTC cold and flu remedies, etc.  This stuff is <i>not</i> safe... and I urge you to consider removing it completely from her diet.  Aspartame is the #1 cause of complaints to the FDA... and 92 different symptoms are associated with it.  It's also marketed as NutraSweet, Equal, and SugarTwin.

http://www.theecologist.org/archive_detail.asp?content_id=458

[MDKing]

has she been to a Neurologist yet?...did you happen to see the Mystery Diagnosis on Discovery Health channel last night?...it was about a girl who was very healthy all the way up until about 12 years old...when she turned 12 she started having severe abdominal pain, nausea, and head pain...she had many tests done - MRI, CT, and others...nobody knew what was wrong...anyways she went to a neurologist in New York City and found out that the bone that allows your neck to turn back and forth was positioned incorrectly...they did surgery on her and also found, during surgery, that the brain was protruding into the spinal area...anyways, just wanted to give some info...this might not even be close to what it is, but since I saw this program last night, I thought I would let you know...

[stlcard1521]

yeah im not a doctor but there do seem to be a lot of symptoms that would suggest autoimmune disease like the other person said. sounds like youve seen several doctors though already and I'm sure they know better than me. but like the other person said, unless they have ruled out autoimmune disease already it might be good to try an immunosuppressant like prednisone for a week or so to see if symptoms improve. talk it over with your docs.

[sally456]

what about taking her to a mayo clinic or a large university hospital where people go when they cannot find out what is wrong.

[myproblem]

Has she been to a rheumatologist? This sounds autoimmune, especially based on the SED-rate, and C reactive protein. The kidney pain may be related to this. Has she ever has protein in her urine? Has she seen a urologist, or a nephrologist? What tests has she had on her digestive system? Any blood tests on her liver enzymes? Has she taken prednisone?