Discussions By Condition: I cannot get a diagnosis.

clubbing, anemia & bone pain

Posted In: I cannot get a diagnosis. 13 Replies
  • 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???

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13 Replies:

  • anyone? anything? any of the doctors in the house???
    anomaly 3 Replies Flag this Response
  • I am sorry, I wish I could help. Everything that I know about low Iron count I am sure that you already know bcause you have been dealing with it so long. Mommy would say its CFS/ME, but everyone know that is a crock, so what should I say...Low iron is a sign of something bleeding, have they checke dany other organs, other than lungs? Maybe your liver or your stomach for ulcers. Smokers are more prone to ulcers(I think). Also, how is your triage info all this time? Blood Pressure, temp, etc.
    Anonymous 42,789 Replies Flag this Response
  • wow, sounds like a whirlwind you have been through. I am not a doctor but in my own research for some answers to my illness I've come across a lot of information. I recently watched a program on TLC called mystery diagnosis and there was a girl on there who went through almost exactly what you are going through. After a few years she figured out she had Lyme disease even after multiple negative tests for the disease. I would recommend searching for a doctor who specialized in Lyme's and having the test repeated. The standard test is not 100% accurate. Also do some research on the types of muscular dystrophy. Some kinds can occur later on in your life.
    nettyaa 12 Replies Flag this Response
  • thank you! and good thoughts--unfortunately, I've already been treated for Lymes, even though the test was negative and MD doesn't come with clubbing. It's that dang clubbing that's throwing everything off. Right now i'm thinking two things and i'll be sharing on the next visit:a. full panels for ALL anemias... research shows that this could very well be a simple combination of my iron anemia, plus the development of pernicious anemia-especially if both are being triggered by malabsorption for some reason .b. hello?! my heart! that causes clubbing and no one has looked at it... that scares the ***l out of me. I'm leaning towards tests for endocarditis.
    anomaly 3 Replies Flag this Response
  • Cystic fibrosis has finger clubbing as one of its symptoms. Maybe that's why they are so keen on looking at your luings.
    Anonymous 42,789 Replies Flag this Response
  • triage: normal... blood pressure is normal at 110 over 80 , temp slight bump at 99 nothing out of the ordinary according to accepted numbers... CF: xray, cat and pet scans would have shown any mucus and i honestly don't think I've EVER had a chest infection of any type, not even bronchitis. i have no cough, wheeze, shortness of breath, etc. to signal any blockage or stress in my lungs... ugh... not being argumentative, please understand that, just answering what i know to your questions... maybe something will trigger someone... oh yeah, and low iron... I've always eaten iron-rich foods but always been iron-deficient anemic--without any bleeding other than my cycle, which i didn't have at 7 =) usually it's under control and hovers at about 11-12, when I'm tired and can tell, it's generally 9-10... but 8, 8 sucks... 8 means nap time =) although... I'm seriously wondering if I'm not some other form of anemic and these guys just labeled me in the 70's and never looked back...
    anomaly 3 Replies Flag this Response
  • cardiac myxoma?. Some kind of iron malabsorbtion problem in the gut, such as IBS?
    rad-skw 1,605 Replies Flag this Response
  • Have you considered CRMO (Chronic recurrent multifocal osteomyelitis). Usually only affects children, but you may be the unusual.
    Anonymous 42,789 Replies Flag this Response
  • hi ive just read over all ur symtoms and nearly all of them iv had a few years ago mi fingers swelt up and they xrayed me couldnt find anything wrong it has steadily got worse all my bones feel sore my elbow and wrists stiffen up and ive been anemic ever since i had my daughter also my father dyed of heart deases im only 21 and shouldnt feel pain like this if can any1 help ?
    Anonymous 42,789 Replies
    • October 18, 2009
    • 02:26 PM
    • 0
    Flag this Response
  • Lyme literate physicians do not diagnose Lyme disease based on blood tests alone because they can give false negative results up to 50% of the time. The treatment your OB gave you was probably not enough for Lyme disease.The only way you will get a proper diagnosis to rule in or out Lyme disease is to see a Lyme Literate Medical Doctor or LLMD. Regular physicians are so oblivious to what Lyme disease can do and how to properly diagnose and treat Lyme that it won't matter how much you trust your doctor, chances are they are not knowledgeable about Lyme.Visit ILADS.org as well as turnthecorner.org and watch this movie clip for more information on Lyme disease. http://www.snagfilms.com/films/watch/under_our_skin/A book that is helpful is Cure Unknown and you may be able to read it on line if you search google books.
    Anonymous 42,789 Replies
    • October 20, 2009
    • 05:20 PM
    • 0
    Flag this Response
  • 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 anywayOB sent me back to my doctor who tested for thalasemmia on the OB's suggestion and ran more iron checksweek 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 daysmy lower legs and lower arms started to tingle constantly--like a humming under my skinmy 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 roomthe 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 nothingsarcoidosis and hashimoto are ruled outbones show nothing unusualhe 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???Did they check your vitamin D levels? B-12 levels?
    Anonymous 42,789 Replies
    • October 20, 2009
    • 06:08 PM
    • 0
    Flag this Response
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  • i would also say to have them check your b12 levels....some side effects of b12 deficiency are nerve damage so that is probably why you have been experiencing "bone pain".
    Anonymous 42,789 Replies
    • October 21, 2009
    • 01:44 AM
    • 0
    Flag this Response
  • nematode infections can cause a lot of your symptoms "T trichiura infections: In heavily infected people, trichuriasis appears to manifest as mild anemia, eosinophilia, bloody diarrhea (classic trichuris dysentery syndrome), growth retardation (chronic trichuris colitis with growth retardation), abdominal pain, finger clubbing, " Google finger clubbing and parasites and go to the emedicine article. best wishesPS also a whole wiki article on clubbinghere is the URLhttp://en.wikipedia.org/wiki/Clubbing
    chrismia 159 Replies
    • October 21, 2009
    • 01:26 PM
    • 0
    Flag this Response
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