Somebody PLEASE HELP!!! ={

Well, I'm now 2 years into a disease that is sucking the life out of me. If I had a nickel for every time I've balled my eyes out & said my famous quote "I can't take this anymore" I'd be a very rich woman!! I REALLY do feel like I can't take this anymore...but I find I have no choice. Why is this? If it wasn't for this site, I think I would have lost my mind, been in a corner of my home playing with my lip & babbling! I'm once again (with a little more information) calling on this amazing, supportive community to HELP! I've been to tons of Doctors, seems like one of every kind. They all agree, something's wrong, they just don't know what. (Gee thanks, does that cost extra??) Well, I've finally made my way to adult Rheumatology at Duke University. Happy, happy, joy, joy...they'll know exactly what's wrong. N O T ! ! ! They say the same thing... "yep, something's wrong, just don't know what. They were gung-ho with lab test, 24 hour urines, but then...they just stopped doing anything. He's suggested muscle biopsy's, another bone marrow (UGH), yada, yada, yada...but doesn't follow through with anything. Where do you go next...what's higher than Duke? Anyways, Here are current labs... maybe someone out there has the same sort of things going on.
For starters, I had a bone marrow biopsy / aspiration done a couple of months ago (Holy wow, God bless anyone that gets to experience that little life's joy!!) My hematologist decided to do this because he had ordered a Leukocyte alkaline phosphatase (LAP) test (?)... it was very high...Normal reference range was (11-99) mine was 301... he suspected a myeloproliferative disorder.... all test came back normal...surprise, surprise. He said that I had large white Blood Cells & Large Platelets??? So, obviously SOMETHING'S NOT NORMAL.... nope, they just dropped it. O.K., so, then went to Duke...

Large WBC & Large Platelets
High~ WBC Count (this is always slightly high) 13.5 - 22.
Low~ Platelets (this is always slightly low) 80K - 140K
High~ Leukocyte alkaline phosphatase (LAP)
Positive~ANTI-NUCLEAR ANTIBODY SCREEN // 1:40 SPECKLED
CYTOPLASMIC SPECKLING PRESENT
Positive~RHEUMATOID FACTOR (Dr. said it was extremely high...has been for 2 years now)
Positive~PARVOVIRUS B19 ANTIBODIES (Dr. said this was a past infection & was of no current concern)
Slightly elevated~CREATINE KINASE
Elevated~SEDIMENTATION RATE
Elevated~CRP
High~SPE ALPHA 2
Very Low~VITAMIN D TOTAL
Negative~ Hep. test, AIDS, Lymes, Mono
Low normal~FERRITIN
Low thyroid~(On medication, under control)
Normal~IMMUNOGLOBULINS (IGG,IGM,IGA)
Normal~ALDOLASE
Normal~COMPREHENSIVE METABOLIC PANEL
Negative~ANTIBODIES-SM,RNP,RO,LA

URINE TEST
ALA URINE VOLUME 5175 mL (I filled 2 of those HUGE orange bottles & had to completely stop drinking for the last 8 hours)
Normal~PORPHOBILINOGEN SPOT URINE
Normal~AMINOLEVULINIC ACID(ALA),URINE

Severe debilitating fatigue. My BODY HURTS! My bones hurt, they have since I was a child (doctors said it was "growing Pains"...seeing that I'm only growing out now....why do my bones still hurt!? My muscles hurt, I can't walk more that around my house or I feel so out of breath...& forget the stairs. My hands & feet hurt terribly. I am nauseas often & will go through spells of throwing up several times a day for a weeks period. I gain weight yet I DON'T EAT!!!??? I've had a crazy pain in my upper right side...every test known to man has been done...they say I have a hemangioma or cyst on my liver...wouldn't cause the pain. (Then WHY does it burn & itch so badly???) "My hands will glow a bright red & white speckled color & at times my finger tips turn purple. My index fingers (only) will go completely numb from time to time for several hours to a couple of days. Getting my words mixed up and at times...I am fully a where of what I want to say & what I am saying. The other day I wanted to ask my son if he wanted pancakes...but what I was saying was something about a train. The harder I tried, the worse it got...this is very scary & frustrating!!! Low grade fevers for NO reason...I feel normal. My finger nails & toenails will fall off (ewe-e, not diseased) I have purpuraI that comes & goes. Strange burses or burses that take forever to heal (RBC count is fine) Bleeds a couple of times a month in the outside white part of my left eye...looks so scary & ugly. Hair falls out. Swelling. ETC...I have cried & cried, been everywhere & done everything I know to do.... I feel as if everyone thinks I'm crazy, I know someone else has had some experience with these symptoms. I just wish I knew the right questions to ask the Dr.'s, I need some answers or the next thing on my list will be loss of mind! I feel like I have one foot in the grave! I hurt everyday, it's progressively getting worse (whatever IT is) Please HELP ={ Thank you all so VERY much for your time!!!!!!