Discussions By Condition: I cannot get a diagnosis.

clubbing, anemia & bone pain

• Posted By: anomaly
• July 28, 2007
• 04:06 PM

I've been jumping the doctor's hoops for long enough, lurking/reading here long enough--it's time to ask around and see if you guys can't figure out what the doctors are missing... I'll try and keep it short/sweet and bulleted for brevity--but i fear this may be a book to cover everything that's happened:

several months ago i noticed my fingers looked funny and went to the doctors with no other symptoms. he said it was clubbing and that it was a chronic symptom of something very bad , checked my iron, said it was low and sent me out the door with instructions to bump my iron.

a week later, intense pain started in my thighs--i couldn't tell if it was muscle or bone, it was very deep. his response was to stop taking the iron and send me for an internal/external ultrasound of my pelvic region--believing that pain in my thighs was related some sort of female problem.

ultrasounds came back perfect... so he sent me to a OB/GYN specialists for more test

meanwhile, it's become apparent that it is bone pain rather than muscle, but my muscles are weakening as well--easily tired, achy, etc. and the bone pain has traveled to my lower legs, upper arms and is starting on my lower arms... now granted, I've been anemic forever, so the fact that i have been severely tired through all this never bothered me... i just figured it was my anemia. my new motto? I could nap!

the OB/GYN says everything is perfect, but that the clubbing is a chronic symptoms of something very bad and i need either a rheumatologist or intern, and here begin the bullets:

OB guy tests for Lyme's/erlichiosis -- negative, but put me on the antibiotics anyway
OB sent me back to my doctor who tested for thalasemmia on the OB's suggestion and ran more iron checks
week later, the pain is now in my knees, wrists, elbows and shoulders
my arms get to the point that i start shaking and can't hold a pencil some days
my lower legs and lower arms started to tingle constantly--like a humming under my skin
my lower legs and feet started to go numb, pins & needles and I'm wiggling them constantly to keep them from falling asleep--i got scared and went to the emergency room
the ER doc told me, ready for it? that the clubbing is a chronic symptoms of some very bad happening ... she does a chest xray and runs a inflammatory agent panel--xray comes back clean, panel comes back elevated, though nothing appears swollen outside my fingertips.
refers me to a rheumatologist, but because i smoke, he won't even see me until they do a cat scan of my lungs--they do, it comes back clean, i get an appointment
but he's very thorough, and after telling me that the clubbing is a chronic symptoms of something very bad happening he looked over every inch of me, makes a 'hmmm' sound at the strange nodule that's popped up on my kneecap, tells me that my cat scan was not perfect, that there is a 5mm hiccup in my upper lobe, and orders a bazillion xrays of my long bones, blood work, and a pet scan . my options at this point are: cancer , sarcoidosis, or hashimoto--and he believes that the bone issue is periostitis because they don't hurt 'more' when you squeeze them, they hurt 'more' after you let go.
head to toe pet scan shows no cancer, no hot spots, no nothing
sarcoidosis and hashimoto are ruled out
bones show nothing unusual
he doesn't know what to do--I've been googling and suggest celiac so we test for that... nope.
meanwhile he's been talking to other doctors and they suggested liver and lungs for clubbing. so he tests my liver--nothing. but hey, my iron is at an all time low for me: 7/33--and no one seems concerned about that beyond "take your iron pills"
he then sets up a lung function test...the tech actually asked why i was there, since I'm not complaining of shortness of breath, coughing, or have a blue color to my lips or fingernails. I showed him my clubbed fingers and he said... yep, that's right--it's a chronic symptoms of something very bad happening
lung function for a smoker that cheated and smoked that day? ***n good. i blew 84-102% .but the doc--who now has a chest xray, cat scan, pet scan AND function test, is still stuck on the fact that i smoke... apparently i have the "very mild, extreme beginnings of emphysema". i got frustrated and angry, asked him the difference between 'very mild' and 'chronic'... asked if that would cause the clubbing and he said no. for the clubbing to be caused by my lungs it would have to be something more advance, and I'd have breathing issues as well as a blue tint to my lips/skin/fingernails... so my next step, a MONTH from now is a pulmonary specialist. yes. after deciding it's not my lungs, I'm going to a lung specialist... I'm sure he's going to tell me that the clubbing is a chronic symptoms of something very bad... arghhhhhhhhhhhh

for the love of god and my sanity--someone, anyone, tell me you know what the heck this is!!!!! I've got a month to google and demand blood tests and figure it out on my own, before i tell both the lung guy and the rheumo guy to refer me to someone with a clue...

wrap up: clubbed fingers, bone pain, fatigue, anemia kicked into overdrive, muscle weakness, tingling in extremities... as far as i can tell, no other issues: intestinal, lung, heart, hearing, vision, or skin. anyone???