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I have swelling in my neck, they are golf-ball sized soft and feel like fluid filled swelling just above the clavical - assuming lymph nodes. They are cystolic in nature as they increase and decrease throughout the day but without any consistency and they are symmetrical. I have been to the doctor but they cannot find any reason to believe there is something wrong. This is only one of the several severe issues that remain a mystery to the doctors as of the last few months.

The first was two trips to urgent care for chest pains which they attributed to "inflamation of the cartilage" - all heart tests were done and no cardiac issues found so based on there being NO information they guessed.

The second was pain so severe in my right abdomen. It started feeling like indigestion and moved to pain so severe I wanted to die rather than experience it. It affected my back and front. They took many tests and x-rays and ultrasound, blood work and urinalysis - still nothing. It was attributed to "must have passed a gall stone" but they had no conclusive medical reasons for that.

Then little things - muscles are very strained in my arms and legs and they cause pain - I feel fatigue and exhaustion. The swelling in the neck is causing pressure pain in my head ears and shoulders. All the joints on my right side are achy and the knuckle on my baby finger is so sore I cannot type with it - but it comes and goes too. The index finger on my left hand had what felt like a boil deep under the skin for a day, then it disappeared. I have to say - I feel basically rotten and tired and have decided I am through with doctors at this point. I feel foolish to be told there is nothing wrong so many times - my symptoms are very real, not in my head and yet I leave feeling like a hypochondriac - I will make it to my yearly exams only but will no longer try to determine what is wrong. I am extremely frustrated with there being "nothing wrong". We know our own bodies, most of us are not making these things up. If anyone has similar I would like to know.

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I am experiencing Supraclavicular swelling in my right & left side. Now I have a lump on my left forearm. I have been to the doctor and have been told that its just a viral infection and that its nothing to worry about. Its been about 3 weeks now and the swelling has not gone down. I am very concerned. For I never experienced this before. I'm tired of not getting any answers. Im tired of being told that I should'nt concern myself over this, but I know somthing is not right.
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I also have a golf ball size swelling above my clavical on the right side, however, it hurts. When I move the pain shoots across to my right shoulder. Have you found out anything definite, this pain started about three days ago and I thought I had sprained my shoulder or something until I found this swelling. Your situation is the closest to mine so I thought perhaps you had found out something %-)
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Finally found someone going through the same thing. In june I had a infected abscess tooth that was fractured by a dentist during a root canal. The horrible pain I went through for 5 months was misdiagnosed as Trigeminal Neuralgia. The medicine Oxycarbazine gave me unrelenting back muscle pain and the doctor refused to take me off the medicine so I went to have steroid injections. At the time my Sternomastoid muscle was hurting and my jaw which I thought was due to the meds to and I was given an injection in that muscle and also a neck block although my neck was otherwise fine.I could not even move my neck the next day and a week later my jaw andtSternomastoid muscle swelled up and was told by a PA it was a infection and put on Augmentin. That night the muscle pain came back and I was switched to Ceftin which I broke out in a red rash bilateral on the lower back.WEnt back for more injections which were injected in back lower Trapezius pole and 2 days later woke up to bilateral swelling of supraclavicular fossa.Went to PA again and she just told me it was fatty tumors. That night the swelling has increase significantly.My doctor just said they were sterile abscess from injections. Then my whole neck swelled up and my doctor kept saying everything was spasms.The infected tooth was pulled and it must have been bad because the dentist refused to talk about treatment plan or even see me again.It took me 6 months to get a dentist to pull all my upper teeth because the infection spread to all the upper gums.The swelling i my neck increased after I pulled the teeth and they are fluctuate but not red. I have been to ENT, internalist cause my right thyroid is swollen too, was told I was missing my left lobe.ENT told me the spine where the injections were given need to be seen by Neurology surgeon but would not tell me why, although it hurts so bad and is swollen. The neurologist would not even talk about my spine just that I have fibromyalgia. yep I have been told that for 18 years what about my spine? Just said to messed up all the way down for him to help, sent me to therapy.Now the infection has gone to my lower gums and my neck is swollen again, but cant get a doctor to help.Know I have had a chronic infection for 6 months but CBC normal when I go to ER. But epitheal high and bacteria 2+ nd liver tests low but they just blow me off. The swelling in my neck have pulled my neck out of alignment and was told it tlooked like I broke my neck. The muscles on both sides of spine ar swollen in spasms. I cant even sleep in bed anymore. I know it is either autoimmune , drug induced lupus but when I got a doctor to do an ANA test the PA tore up the test without my knowledge and the rheumatologists I went for said its just fibromyalgia to, which isn't a disease that causes swelling refused to do further testing. Or its infection 2 surgeons refused to do biopsy. The first was going to but the PA talked him out of it.The other said it was too deep as well as the skin doctor said. Or its cancer but need biopsy. Ity is not red but infection does go down or up.I feel like I am in twilight zone that doctors protect each other as well as dentists. I was serousl injured 3 out of 4 csections the last one almost cost me my life and left me disabled but I never sued. Do they not know or just don't want to be involved. I have a list of causes for the swelling I can put up on request. Any of you have dental problems?I know its not spasms because of the fluid like flunctuance and was told by neurol;ogists there was something in it probably blood, but would not help. Good Luck All.
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I wro'te a page long letter about my experience with sudden onset bilateral swelling in Supraclavicular fossa the last 6 months. But it wasnt published probably due to medical error. The swelling is causing my spine to move out of alignment and fear paralysis. There are about 5 things I have reviewed that cause this. Infection, I have severe dental infection that I cant get under control. Medication interaction especially anti seizures and antibiotics. Autoimmune, thyroid or Dermacytosis, or lupus.Malignancy if one sided you can look up which part of the body drains there. Injury especially yo C2-C4 of your spine.Unfortunately know one will help me because my doctor misdiagnosed the swelling in my shoulders when it started so cant get any help from specialists. Had a neck infection for 6 months due to dental work and was misdiagnosed as muscle spasms.I have been to ENT, Neurosurgeon, Endroconologists when I found out missing left lobe of thyroid and my thyroid lab work is messed Fibromyalgia. I know that fibromyalgia does not cause inflammatory reactions. Good luck to you all, its sad when the medical profession won"t help us, feel like I am going to go crazy.
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I have experienced the exact same issues as the others on this entry. Does anyone have any answers yet. I am going into 10 months being very ill with infections, fatty tumors, and thyroid issues. ***this post is edited by moderator *** *** private e-mails not allowed **
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I have these same issues....golf ball sized supraclavicular swelling on both sides. Worse on my left. It results in limiting my movements and is a strain on my neck, back, and arms. It is especially difficult to lift my arms over my head. I've seen many doctors and no one seems to have an answer, they are all perplexed. This has been going on for many years, and as I get older (now mid 40's) it is getting worse. It is ironic that I also have other issues in common with the above posters....fatigue, trigeminal neuralgia, multi-nodular goiter (the specialist said this has nothing to do with the SC swelling), damage to my C-spine (disk that has slipped and torn leaking fluid, as well as bone spurs) and I also now have a small "dowager's hump" on my upper back. I've been tested for Cushing's disease several times, all negative. I would dearly love to know what is causing this....my worry is that it is serious and I will find out too late to do anything about it. 
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Hi Hope,

I am an RN and have the supraclavicular swelling which appeared

yesterday. I also have a goiter with many nodules, Md did biopsy of

two of the largest which were negative(2 yrs ago).I have recently

developed lower back pain for the first time and Ortho did MRI.

He gave me prednisone and all the pain went away,but came back

after prednisone was stopped. When I went back to get results

of MRI, I had developed pain in every joint and unable to get up

out of a chair after sitting awhile. The ortho dr. had labs drawn

to rule out RA or other connective tissue disease and put th

lower back problem aside.

The swelling above my clavicle has just appeared - I have a very

good primary doctor that I will see Friday. I can't imagine ignoring

this. I am very concerned that this could be one of a number of diseases.

I think this swelling is related to the lymph system/ nodes.

For those of you who have hit a brick walll with getting a diagnosis

I would go to John Hopkins in Baltimore, Maryland if possible.

I took my elderly mom there when doctors kept saying they did not

know. I called and made an appt. -told them the problems. We spent

one day and she went thru the related departments and at the end

of the day, we left with a diagnosis and treatment plan with referrals.

Good luck - I am anxious to hear my diagnosis with the swelling..
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Have you ever been tested for lupus?.... my husband has recently been diagnosed with it after experiencing severe trauma three months ago. He has ALL of the symptoms you speak of and woke up this morning with supraclaviular swelling. Suggest you get an ANA test done....
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Hello,  I have had a supraclavicular swelling for 6 months now on my left side.  The swelling is soft and the size of half a tennis ball.  The doctor sent me for blood test, x-ray, ultra sound physio and refered me to a consultant and for MRI.  The consultant sent me for ECG which came back clear.  The MRI showed that I have a nerve ending compression of the C6/C7 joint.  The Doctor said that the compression of the nerve had lead to the nerve dying and so it would need to regrow.  The physio has helped alot and has helpped with the rebalancing of the muscles that now have to compensate.  I am told that by christmas (8months after starting) i should be fit enough to work properly.  I am also told that it will take anything from 6 months to 2 years for the nerve to regrow.  The physio has had to do a lot of release work in my neck, shoulder blades and ribs.  I have noticed considerable improvement every month and each two weeks i can see improvment. In the begining i spent nearly a 6 weeks lying on the floor doing nothing.  I hope this helps someone.

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I have been having the same problems for over a year now and virtually identical to yourself....... I have had many scans and xrays only to be told there is nothing wrong yet I am in considerable pain in the shoulders and the swellings on both sides are the siz of golf balls. I am waiting to see a Rheumatologist and praying that he can help me.....I have a permanent sore throat and painful ears, i am guessing from the pressure.......Did you ever get a definate diagnosis and if so would you be so kind as to share this....I am getting kinda desperate now.......Thank You
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Hi there, From what I've read, this may be caused by thoracic duct blockage, I guess usually be a cyst. I just saw the dr. but didn't get the info from him- he hadn't any idea.
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Did you have any fever/ night sweats? i think you should ask to be worked up for tuberculosis, you may have TB lymphadenitis. granted this is not a common disease in western countries (and doctors wouldn't necessarily investigate for this) but you never know who you may have come in contact with who've had exposure to this disease. Most of your symptoms fit.
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pleas get a TB workup done.
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I am quite surprised by how many people have these same symptoms yet no medical professional has been able to provide any possible diagnosis.  And here I find myself able to describe the very same things going on in my body without much hope of finding a solution.  My work is physical so I first attributed my neck and (left) shoulder discomfort to just that.  I would ask my sister, a nurse, or my son, to massage my neck and shoulders, which provided temporary relief.  Hot showers provided some relief and  because I am a stubborn sort, I still assumed my work was the culprit.  

Then, around Christmas of 2012, I noticed a swelling on the left side of my neck.  It was around the clavicle area, soft, almost gelly like in nature, and about the size of a ping pong ball.   The swelled area itself doesn't hurt, but my shoulder aches constantly and the pain radiates downwards into the outer side of my left arm.  At times my neck feels stiff.

I have an appointment with a doctor tomorrow but don't feel very hopeful since there are so many posts from other people with no realistic answers from their doctors.  Has anyone anything new to report?

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