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Bitty wrote:

shanbear wrote:Hello everyone!  I hope you all are hanging in there, especially our friend who was diagnosed with mesothelioma.  Unfortunately I have no good news for anyone.  My case is moving very slow due to insurance snags.  The never ending red tape, everything requested by Doc has to be approved by insurance, and then the wait for an appointment.  My symptoms are progressively getting worse and my left arm is debilitating more everyday.  I am currently waiting for results on a bone mass CT scan of my neck and left shoulder, checking for herniated disk or blood clot.  Since my pain has increased my blood pressure is high now and I get what I call fatigue shakes in my hands and arms from the pain.  I have studied the lymphatic system and I can tell you that I can literally trace a trail of tender aching spots that follow along my lymphatic path perfectly.  Currently my neck and collarbone on the left remain swollen as always as well as left armpit, and now, i have swelling in the nodes of my inner thighs and groin area.  My Doc finally agreed to give me some pain relievers which helped me function and get some things done, get off my bumm so to speek.  He won't refill the pain relievers until he can see me again, he says, and then went on vacation for 2 weeks, HA!, just figures.  So I wait for his return so I can get test results and pain medication again. I have also scheduled an appointment for a second opinion since my current doc and insurance won't agree to a chiropractor.  My Doc said we were going to pursue tests for lymphoma, however he renigged on that until there is more suggestion of it.  I have lost more weight, have no appetite, continue to sleep much of the day, no energy at all, and now I am getting depressed.  Last time I saw my Doc he wanted to give me a third steroid shot, I declined since the previous two did no good.  I do believe my current doctor is stumped and has no idea what to do next, he pretty much said it himself.  This is another reason I am getting another opinion.  Sincerely I believe this is a problem with my lymphatic system and I can only hope that I find a Doctor willing to persue that avenue.  Another thing, I had a friend help me test my Thorasic Outlet and my pulse was lost under 10 seconds so there's obviously a problem there.  Nobody should loose their pulse at all when the Thorasic is tested, this indicates a problem with blood flow from the heart to the jugular as I understand it.  In this case I am determined to know if I have a blood clot in my jugular as the one poster stated, they discovered a 2 inch blood clot in their jugular vein. At this point I am willing to try anything, test for anything, and settle for whatever outcome.  I am just tired of being sick and not knowing why, even at the worse diagnosis I would feel better just to know.  You all take care, I will keep you posted, and thank you Bitty for your concern.  Be well

Update....In March I had extensive dental work done, root canal and treatment of infection.  My other symptoms have remained and are steadily getting worse, I am loosing weight now and experiencing muscle weakness.  My Doc is suspecting Lymphoma and proceeding with the tests.  CT scan first and biopsy of glands.  I'll keep you all posted. 


Shanbear,
I have been waiting to hear how you are. Please let us know!
I really sympathize with everything you talked about.


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All,

I have had the very same symptoms you all describe, for about 3 1/2 years. I first noticed it right after my surgery for breast cancer. Needless to say it freaked me out as I thought the cancer had spread! My doctor ordered a CT Scan and an ultrasound but all of the results were normal. I have recovered from the cancer but the lumps come and go. I've noticed that they are more pronounced when I am feeling stressed. I am trying to eat healthier and regularly take yoga to relieve tension. I think this is helping a bit.

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Just wondering if anyone has any new answers on these swellings above our collarbone. I still have no answers. Just keep going to different doctors and they have no answer.
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Everything I have been through all leads back to stress and clinching my jaw/teeth. The more stress I'm under, the more i clench, the bigger the area gets. The less stress, less clinching, smaller it gets. Just wish it would go away!
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i have had mono or chronic fatigue syndrome for 8 months now and that is what they blame the lumps on. it is very frustrating. would be nice to get my life back. i just keep praying about it because no one on earth seems able to do anything about it. 
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The frustrating part is they don't seem to care and are not concerned. It causes me physical discomfort and they don't care. 
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I know how you feel. At first, everytime I went to the doctors I was sure that one of them would figure it out. But now I have lost hope. It would be nice to have a doctor that wants to help a patient because it is the right thing to do. I have great insurance, so there is no excuse not to keep trying. My last doctor said to me there is nothing more I can do for you. It's been a year and 5 months with many doctors and no answers. And what bothers me the most is when they have no answer they say it's probably just stress. The only stress I have is I am tired of being sick!
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The question I don't understand is how does stress cause your neck to swell? The doctors can't seem to answer that question.
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WOW same problem. I'm 58, 30yrs ICU nurse and the left side started bulging once in a rare while.  The last 4 months it happens every day. Both sides. Left side always smaller. Right side looks like I am a body builder.  Not over weight, Thyroid normal. Echocardiogram normal. CTA showed no dissecting vessels leaking. Ultrasound showed no SVC  obstruction. Shoulder x rays showed no arthritis.
I've had as many as 3 Dr's stand there and say" hop on one foot, bear down, hold your breath" etc. All trying to determine what makes it bigger or smaller.  The gel like swelling does not have Sub Q crepitus, does go down with reclining or sleep, increases with activity (not necessarily upper body activity).  It can really go up if I am sitting and stressed as in balancing the checkbook.  Could be related to elevations in Blood Pressure (got plenty of that). One Dr said maybe a ruptured Pleural membrane and it is the apex of the lung coming up.  Man I hate it when my lung comes into my neck.  Lately it hurts more.  Feels like a bruise or pressure.  When the right side gets real big there is pull and pressure in my right chest. Contributing health risk factors include High Blood Pressure, Marfans, and pacemaker.  Getting real old.  I want it gone by summer.  It will really ruin the swim suit look.
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You have no idea how relieved I am that I'm not the only one who has that gel pack lump(s) on both sides of my neck over the collar bone that comes and goes without an etiology of this strange condition.

Thank you for all your input and if I find anything out on my next annual GP visit this Thursday, I'll let you know.  I expect the same thing I've heard for at least the past four years..."it's not your lymph nodes, there's nothing noticeable in your thyroid and your blood work doesn't show anything that could explain the swelling"... Good luck and God bless...



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I went to a new doctor yesterday. She seems interested in helping me find out what is going on. I have to go have a CT scan with contrast of my chest. Then she wants to review all my medical tests and records that I have. ( I keep a notebook with all my test resutlts, radiology reports and labs.) I pry that this is the doctor to help me..... Ill keep you updated.

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I first noticed this condition about 7 years ago. the right side swells more (twice as much) than the left, with the left playing "copycat" (swells just after the left). There is a dull ache, but I assume that is from the skin stretching and the tissue resting on the collarbone. I have taken pictures of it, but it is never swollen when I see a doctor (like the appliance that works fine when the repairman arrives). I also have hypothyroidism, as well as a neck and low back injury (right side). I visited a spa 7-8 years ago in New Mexico for an acne facial (extraction) The technician noticed what she called a nodule next to the cartilage in front of the ear canal (right side). After arriving home in Texas, about 6 months passed before my symptoms became severe. My hairdresser began noticing rough patches on my scalp, and then I began having a feeling like needles poking me behind my ears all around the curve. There were tiny, itchy, blister-like things there that bled when touched or washed. (I treated myself for lice and bedbugs because I travel extensively) I also moved and bought a new bed. Not long after, what I thought was just a pimple on my right cheek would not go away for more than a month! Within days, my face, neck, and forearms (from shoulder to elbow) were covered in angry, red, fluid filled lesions. Sometimes the inside of my wrist will itch, and then I am broken out immediately. Sometimes there is no warning (but always the swelling). The swelling is usually accompanied by one or two very small "bumps" directly on the site. The breakouts subside only long enough to allow for the next one, so my skin never gets a rest. During one breakout, I will have the little blister types, plus some that stay under the skin (like acne), some that feel like fingernails stuck in my skin, and just itchy spots that bleed when I shower. The deep ones have to be removed by the doctor. I have one near my elbow now that is about two years old (no health insurance). I have seen dermatologists, an allergist (allergy free), had an MRI (clear), blood tests, have been tested for STDs, all known skin diseases, and the docs (6 of them!) just shake their heads and treat me for acne and dermatitis. I have been told it is my fault, I need to drink more wine, and this could not be happening if I were not "scratching" my skin. I cannot scratch because my skin always feels like I have a severe sunburn. No doctor I have seen is even interested in hearing about the swelling near the collarbone, dismissing it as unrelated and treating me for infections. (for 7 years!!??). I have received heavy doses of antibiotics that did nothing but make me sick (nausea, room spins, general dizziness). During the swelling and breakouts, I am very fatigued, and not myself. Docs just stick me in the stress and acne category and send me on my way. Am I stressed? You bet! I have a horrible skin condition that cannot be treated because there is no diagnosis. I can no longer wear my hair short because my entire neck is either broken out or scarred. I am too embarrassed to wear sleeves above the elbow. I used to go to the beach or the pool with my grandchildren. I have been turned down for massages, and I have to explain to every new hairdresser what is going on with my scalp and neck. What I have is not contagious, but if I were a hairdresser, massage therapist, or chiropractor, I would be worried and wanting to at least wear gloves. On a recent episode of Dr. Oz, a guest speaker talked about functional medicine. She said that doctors tend to use textbook diagnoses rather than investigative techniques to get to the bottom of unusual symptoms. ***this post is edited by moderator *** *** web addresses not allowed*** I found a doctor in my area and will try that.
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Hi everyone, Yes, I have the same symptoms too. My neck area above my collar bones is freakishly swollen and it feels like a gel pack as previously described. I am dealing with some other issues which are neck and shoulder related, please tell me if any of you are experiencing the same issues. I have a pinched nerve at C6/C7 and in my left shoulder I have bicep tendinitis and an impingement. They are thinking possible thoracic outlet syndrome to explain the shoulder and left arm pain and numbness and tingling in the fingers. I am a 45 year old woman and I've been sedentary for the last 8 months due to my neck and shoulder injuries. I tried Wellbutrin due to the depression from the pain. Over the last 8 months I've taken Vicodin, Soma, Flexeril, Advil, Motrin, Tylenol and several natural supplements as well. I'm going to see an ENT tomorrow and a neck/shoulder specialist on Tuesday. I'm not thrilled reading that this is something that may be with me for a while! My neck looks thick and puffy, it's horrible! I'm going to focus on my diet, some light exercise, acupuncture and anything else I can try to cure this. I am currently taking Amoxicillin to rule out any infection. I will keep you all posted. Let's see if we can all find an answer together!
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Went to get a CT scan with contrast of my chest today. The new Dr requested that I get it. Still no answers. I agree with "Find a cure" in working together. I think that we all need to stay posting so that we can try to get some answers. If our one doctors become many doctors then we have a team of doctors working on this illness. Maybe one of them will come up with an answer. I can't even imagine going through this for 7 or more years like Harleysmommy has. After one and a half years I am so tired of feeling this way. My prayers are with you all.
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And Find a Cure...I am also experiencing right shoulder pain and neck pain in the back of my neck. At times, I feel tired, nauseated, and dizzy. I have not had any neck injuries that I remember, but a CT scan on my neck shows a slight right sided disc protrusion at C6-C7. The doctor said it is so slight it wouldn't be causing this pain. Everything else is normal in my neck area on my tests. I have had ct scans, MRI's, and ultrasounds of my neck and head and spine and no answers to anything. No explanation to the neck swellings. I will keep everyone updated.....
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