Discussions By Condition: I cannot get a diagnosis.

Baffled and getting desperate..

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: blb_1971
  • January 4, 2008
  • 06:19 PM

Sorry, but this will be a long post. It started in the beginning of 2002. I started getting sick quite often and also very tired, so I went to see my physician on several different occasions. At first, he said that I was having chronic bronchitis and upper respiratory infections. After several rounds of antibiotics (which made me feel somewhat better but still not like before it started), he noticed that my white blood count (WBC) was high and was not going down (normal for me around 12000 - 13000 at that time but also had been as high as 25000). So, he sent me to a hematologist who discovered more than just a high WBC. He noticed that my red blood cells were not right, they were to small, so he ordered a lot of test which he finally lead him to a diagnosis of a Thalassemia Trait disorder. That was fine but not really what I was wondering about. The Hematologist decided that there was something there but he didn't believe that it was life threatening and that eventually it would reveal itself.
Now, throughout the years, my WBC has continued to rise (average of 16000 - 18000) and my fatigue is just getting ridiculous and out of control. Here is a list of some the symptoms I have had throughout the years:
Persistent symptoms: Leukocytosis (high WBC), fatigue, minor shakiness, lack of appetite, "Flu-Like" symptoms without fever, back pain (mostly lower but also radiates to middle and top)
Frequent symptoms: headaches (mostly migraine lasting from 1 - 4 days), limb weakness, nausea, night time itching,night sweats, dry mouth, sore throat, diarrhea
I have seen 2 different hematologist, 1 infectious disease specialist, and 1 Phsychologist (to rule out depression of course) and here are some of the test that have been run:
2 bone marrow aspirations (results: 1. mild microcytic/hypocromic anemia with anisocytosis 2. storage iron present, but decreased 3. mild to moderate increase in megakaryocytes with hypolobated forms)
2 auxilary lymphnode removal w/biopsies (results: show sinus histiocytosis, hyperplasia, and melanin-like black pigment deposition. No granuloma or malignancy seen.)
Upper and lower intestinal scopes (results: unremarkable)
MRI of head w/contrast (results: unremarkable except for some sort of dermatologic cyst)
FISH (results: No evidence of monosomy 5 or 7, trisomy 8, or partial deletions of the long arms of chromosomes 5 or 7. Also No evidence of a rearrangement or loss of MLL)
Overall I have had many, many test with no answers. I just feel that I am alive and not living and the doctors I have seen don't seem to care. Honestly I wouldn't care what they told me as long as it was something. Could this be a form of Amyloidosis? If anyone has experienced these symptoms or anyone has any idea of what is going on, please let me know. Thanks and sorry for the length of this post.

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