Hello, I have been feeling unwell since July '12. First symptom, which I blew off thinking it was perimenopause, was ungodly sweating when doing normal activity. I mean soaking through clothing, bra, underwear ... the works. In August got bit by a tick which caused me to go to Dr. he put me on doxy and did bloodwork. All normal.
Symptoms: significant weight loss 13 lbs in 4 weeks without trying, low fever on and off, sever fatigue, have to take breaks even vacuuming, arms get shaky drying my hair from holding hair dryer, shortness of breath, headache daily, some worse than others, bone pain in left shoulder joint and lower spine(at the very bottom of my spine), sleep problems, foggy headed-cant think of words when I talk sometimes, itchy skin especially back of neck/head where nodes are swollen, sore everywhere in mornings, like I have to "warm up" before I can actually get moving. I see the Hematologist this Tuesday, but wondering if I should be seeing endocrinologist? Surgeon appt scheduled for FEBRUARY? wth?? Have been re-tested multiple times for Lyme and tick diseases, all negative
Meanwhile swollen lymph nodes behind ears, back of head, neck, arm pit and groin area. Sent me to Infectious Disease Dr. who ran crazy amounts of bloodwork. Testing me for everything from West Nile to Aids, sexually transmitted diseases etc. Some bloodwork came back "wrong" but not infection.
High T-Lymph Hel/Sup- Neutrophils 77 Neut (absolute) 7.9
High D-Dimer .48
High Aldolase 8.8
High Parvo B19 IGG 6.5
High C4 38 (but not C3? )
Very low Folic Acid 4.3
Low Vit D 27
Low IGG subclass 2? 112
West Nile = Equivocal
Diagnosed me with Vit B Anemia and malabsorption, unknown reason, no diarrhea or vomiting. Started me on
prescription vitamins and B12 shots.
Told me to retest in 10 days for West Nile - Which remained the same???
Told me nothing more he could do. Referred to internist.
Internist, clueless, referred me to GI
Got Upper Endo and Colonoscopy with biopsies - all normal
Internist referred me to Rheum
Rheum said all Rheum blood work from Infectious Dr. Normal. Sent me for full body bone scan and xray of shoulder and lower back. All normal
Internist sent me for ultra sound of neck and referred me to Hematologist
US found - multiple enlarged lymph nodes. Largest on right side, 3 smaller ones on left. Saw possible nodules on Thyroid recommended a Thyroid ultrasound(apparently a separate script)
Found "Multiple solid and cystic nodules both sides" largest solid just over 1cm.
Internist referred me to surgeon, in addition to hematologist.
I am typically a non stop, full of energy person. Very active. Now its all I can do to get through the day and take care of my son.
Sorry so long... any advice would be appreciated. Do you all think Hematology is the proper next step? If its cancer, I wish they would just say... I can handle it! I am not a get into bed and give up person... I just need to know what I have to conquer!
You probably feel like the negative tests are a waste, but ruling things out is essential. Many people can't afford to do all that, and never find the answer. I think you need fine-needle biopsy. If tests are inconclusive because they didn't get enough cells, you will need antother one, unfortunately. I remember hearing radiologists complain about the thyroid. They can see nodules and cysts, but only fine=needle biopsy can diagnose it, and that can be tricky cause it's all so small.
Thank you all for your advice. Unfortunately, I've had mono (about 15 years ago) so Epstein Barr test came back inactive. As far as the surgeon, primary Dr said sending me for evaluation.... just frustrated to wait until February with the way I'm feeling. Tuesday I see the hematologist, will they be able to do a biopsy, or does it have to be surgeon? Wish there was a real Dr. House who would put me in the hospital for a week and run every test to get it over with, lol. Trying to keep positive...
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