Swelling above collar bone

[KKeeran]

I have swelling above my collar bone.  It started out on the right side as a firm lump (like a muscle) and then the left side.  The right side started to swell and then the right arm pit did.  Now the left side is swelling.  Both sides are now larger than half an egg.  I have had some blood work done, a CT Scan with dye and X-Rays.  I have been the a Family Physician, ENT and Orthopaedic.  No one knows what it is.  Basically, I can summarize it as "That's not normal but I have no idea what it is and it is outside my area of expertise."  The CT Scan does not show any masses - I was worried about Lymph Nodes but basically, that has been ruled out.  I am achy, tired and don't feel like doing much.  If I over due it the swelling does not increase but the discomfort does.  Sometimes it hurts up my neck to my ear.  

Any suggestions?

[fill661]

mine is the same thing on the right and swellingon the collor bone I dont know whatit could be but is red and the swelling is above the colar bone can you help me?

[bpeters27614]

I had the same symptoms. My swelling above the collar bone. It took me a couple of months of searching. Dr's didn't know. Finally ran a "Cortisol" level test, and it came back "positive", way out of range for high. Ended up that I have "Cushing's Syndrome". This especially goes with my symptoms of abdominal swelling. It is very rare, and not a lot of Dr's know about running this test.

[Eberhardt1973]

It's not rare. It's just that a lot of people expect doctors to know about nutrition, and they aren't nutritionists. Doctors know how to (1) assess, (2) diagnose, and (3) prescribe. Prescribing is where the real paycheck comes from for a general practitioner. Look elsewhere for your road to health.

[bpeters27614]

I had the same symptoms. My swelling above the collar bone. It took me a couple of months of searching. Dr's didn't know. Finally ran a "Cortisol" level test, and it came back "positive", way out of range for high. Ended up that I have "Cushing's Syndrome". This especially goes with my symptoms of abdominal swelling. It is very rare, and not a lot of Dr's know about running this test.

[elly294]

I have had symptoms of excess fat around my collar bone for a very long time, a doctor told me that it was just fat so i thought nothing more of it until I began experienceing extreme hair loss for the last two years and began digging deeper to find out what the cause might be. Two possible diseases came up, Lupas and some thing called Crushiing Syndrome. Symptoms of this syndrome may include irratitability, weight gain in abdominal area, excess fat around collar bone,no libedo,hair loss, excess facial hair in women, redness in face, thinning of arms and legs and some thing called buffalo back which is excess fat that collects in the middle upper back. The cause of this syndrome is caused by excess cortisol being produced which can be triggered by extreme stress over long periods of time and or noncanceroous tumors on the petutiary glands located behind your sinus cavitys. these tumors excrete large amount of coritsol which in turns drives your hormones out of wack. you can also develop thes tumors on other glands, adrenal ect.

[bkaur803]

i have exact  the same. doc thinks its TB or lymphoma. iv had mine surgicaly removed to get a final diagnosis, after a month of on going test, wich didnt give the doctors any further indication of wt this is, i hope u well.

[listen866]

I have the same problems as you except mine started out on the left side. I also have swelling in my abdomin. I have throughout my life have had several cyst either removed or rupture starting at the age of 10 I am now 42 . I have recently noticed another cyst on my the front part of my foot. This is all very frustrating I to have been told by doctors that they dont know what it is . I have noticed one writer above dutch1956 who is probably of dutch decent which I am also . Is anyone eles? maybe there is a connection and does anyone eles have a history of cysts or any abdominal swelling also .  hopefully one of us can find an answer.
from listen866

[Mucky]

I have the same thing.  Swelling just inside my collar bone.  It started by coming and going and now it just stays swollen.  Same deal with the big panic over it being a lymph node.  We've done bloodwork, CT scan w/ and w/o contrast, chest x-ray, and an ultrasound of the area.  I've seen four family doctors about it now (all in the same clinic - it's impossible to get appointments with the same person) and they've pretty much run out of ideas.  We thought it was a cyst until the ultrasound just showed normal cell structure.  The best guesses are a fat pad or fat cells that have gone awry.  I see an ENT at the end of the month.  The really strange thing is that when I had my physical last week, my doctor said that she has two other female patients with the same symptoms.  They are both still working with an ENT with no answers yet.  I'm trying to think of things that I might have in common with those other women that would help explain what's going on.

[kimmiworld]

I am having the same issues..They have tested me for lymphoma,leukemia..xray etc..no answers..how bout you?

[dutch1956]

my collar bone itself swells, protrudes out and back in, and i can feel it when it, the bone, swells......sometimes its tender, only have it on one side and my ear also hurts at times then goes away quickly....isnt there somekind of specialist in this area????