Both sides of neck swelling above collarbone

I am so glad I found this. I have the exact same swelling above my clavicle on the L side. I have had increased shortness of breath even while just walking and talking. I am exhausted all of the time and feel weary. There is also swelling under my armpit. Seems we all have this "mystery" disease with the same presentations. My father also has this problem, he lives 1800 miles away so chances are it is not environmental unless there is a familial sensitivity to something? He was told he was too fat and that was the cause. Madness. I do correlate an increase in the swelling when I walk the dogs and begin to have trouble breathing. It's definitely not Madelungs disease. Maybe we can self diagnose as a group. It is worrisome not having knowing what this is.

At last I found a doctor who takes me seriously about the lump at the base of my neck! I have had it for 3 years now that I am aware of, I have seen 3 doctors previously about it and have gone for thyroid blood tests, the blood tests showed all is normal and the doctors also dismissed my concerns. This doctor was recommended to me and diagnosed the problem immediately as being thyroid related. Though thyroid blood tests can show normal, one may in fact have a problem with thyroid! I went for an ultrasound yesterday and as expected, there is an enlargement of the thyroid - which can be treated now that we know what the problem is. I will see the doctor again next week to finalize medication etc, but am so relieved that finally I know what the problem is. So the moral of the story is - do not rely on thyroid blood tests alone when you suspect your lump is thyroid related!

i have the same problem too.... I have had swelling on both sides of my neck....it never really goes completely away but increases and decreases in size....especially when am stressed out...

i face same problem. swelling on my neck(lower left side). i had ct scans, bone marrow, and biopsy.. diagnose with cancer.. then during my diagnose procedure i asked abt swelling.. they told me its have many reason none of them is to be taken easy.. swellling on nec, face, means lympnode cancer, with cuff and cold means lung cancer or TB all are serious problems,( not all cases have same problem) so they need to be treated well rather that avoiding..

I have been to see a specialist and the response is that doctors missed correctly diagnosing my problem as thyroid related because the blood tests showed normal thyroid functioning and because the thyroid showed even enlargement all over, with no uneven lumps or bumps to be seen.

my blood test report was ok but x-rays tells different story. so doctor advise me for biopsy which confirms cancer

Hello. I came back here to update folks. Same symptoms, but I've done the tests.

 

Since I last posted I have had a CT scan, and blood work. The CT scan did not find anything except some "calcification of the tonsils". Apparently many people have these "tonsoliths" in their tonsols. Usually they work themselves out on their own. When a CT Scan is done - most CT Scans will "find" these tonsoliths. I was told that is symptom more of the CT Scan mechanics than a sign of a health issue.

Still when I got home I started gargling with salt water every morning and night now.

Everything else looks "normal" is what they said. No hard lumps or masses, and the regular xrays had already shown a clear chest.  The only symptom they can see is

a) the swelling above both collarbones

and

b) a high white blood cell count. 

They said that they are not fat pads but fluid, and the fluid is centered around the two lymph glands that dwell in the hollow of the clavicle (collarbone). We talked about what the next step is.

 

Next is an appointment is with an Ear, Nose, Throat specialist. My doctor said they will put a camera tube in my nose and try to find the source of infection.

 

Strange. I am getting closer to thinking that I may be stuck with this swelling the rest of my life. I noticed the area sore after typing all day or after carrying something as simple as a briefcase, or a garbage can. Sometimes I get a little jolt of pain in the center of the swelling. Not often, but enough to cause a distraction.

 

Two months ago they were no there. They appeared overnight.

 

I will come back soon and update again

 

I will be seeing an ear nose and throat Dr. and will see about the camera too.  I feel my problem started with a extraction of a tooth in March.  I haven't ruled out lymphnode cancer though.  I will knnow more when all tests are back by Oct. 20th.  Another scan to see if the area has grown after a few months.  I'm sure it has because I can feel the pressure in my shoulder and neck but of course I'm using my arm.  If larger I would assume a biopsy would be next.  ms please keep us posted on your treatment and good luck.

Interesting that you mentioned dental work, my problem started two weeks after an absessed tooth had a root cancel done to it.

my treatment was ends on 6march 2012 :) now im on follow ups every in every two months and im feeling much better than pre cancer dates.. except the side effects of chemotheropy.. sweeling doesnt mean cancer or tb.. but its not ignorable thing..

I wrote in minths ago. 63 female ,20 pounds overweight,excercise regularly, sensitive to chemicals (perfumes, cig smoke ,new rug-car-paint, etc.). I'm now going thru chemo treatments for ovardian cancer stage 3C. Obviously since there's men with these fat packs around their necks this is not a diagnosis for anyone but myself. I'm trying lymph drainage, & acupuncture & my gel packs change size but always bigger on the rt. side. Best wishes to all of you.

Hello All, I began to notice the swelling on both sides of my neck about 5 or more years ago. I didn't say anything, basically because is scared me, but began to look at other people to see if I could see it in others. I began to notice it in friends and co-workers, each on I noticed it in, had an auto-immune disease. Always that same swelling, that really began to freak me out. The people I se had, MS, Lupus, Fibromyalgia, and RA. Still, I did nothing. Then in 2009 I became very ill, and they finally diagnosed me with, guess what, an auto-immune disease. The disease is called Sarcoidosis. It affects the lungs, and is actually pretty common. When I finally did ask about the swelling, they said it could be the lungs swelling. I did get everything tested, Cat scans, blood test, etc for thyroid and lymphatic. Nothing conclusive in the clavicle region. This is not to be confused with those that do have issues with their lymphatic system, that is much more serious! I am truly sorry to all you out there that are battling cancer, and wish you a speedy recover.

Sarcoidosis can cause extreme fatigue, out of the blue, then go away. I am not saying this is what you all have, but look into it. It is considered one of the most common and undetected auto-immune disease, with little to no research done on it, because 70%+ people who get it, it goes away on its own in 6 month to a year. I have a much more serious case, and it comes back again and again. I went almost 2 decades not knowing why I would get really tired sometimes, to the point of exhaustion, and then be ok. I hope this helps.

i was diagnosed with this around 2002, I have lung involvement and bad scaring and am on inhaled steroids and prob will be for life. I have found that with the fatigue I do get great results from using the 5 hour energy drink ( that little bottle full of niacin). Do you find that when you do get the fatigue that you have problems acutally getting to sleep ( not when taking anything to fight fatigue)?

Dear guest, I have the same described symptoms and swelling on both sides of my shoulders. The doctors have sent me for an ultrasound and x-tray to determine the cause of my swelling. I read on the internet it might be Degenerative Arthritis

I have the same symptoms and you she check another doctor because you might have degenerative arthritis in the neck bone which causes swelling around the neck base and pinching of the nerves in the area of the C5-C6 neck disk. this pain can extend as far as the armpit and goes down the arm as far as the index fingers. please check it out and I wish u better!!!