Lymph nodes everywhere, collarbone included + symptoms?

Posted , 26 users are following.

Hey everyone I'm new here,

I am 20 years old and for a year and a half I have been experiencing symptoms and lymphadenopathy.

I have been to multiple doctors/appointments but no doctor seems to take it serious enough.

It first started with severe lower abdomen pain last year in May which then lead to me getting blood tests and a ovarian ultrasound. Blood test was good and ultrasound showed a 29mm 'complex' cyst (which they weren't bothered about).

After that I'd have multiple blood tests, recent ones showing I'm anemic (low iron and satn).

Also had an abdomen ultrasound which was normal "no sign of abdomen lymphadenopathy"

But ever since the chronic nausea and abdominal pain perisisted everyday til now I've been anxious and read online about lymph nodes, I freaked out as I could feel mine so easily and big ones under my jaw, this year in February I read about collarbone lymph nodes and how dangerous they were if you could feel them (mainly for cancer suspicions). So I felt there and generally didn't feel anything obvious, until I'd shrug my shoulders back and pull the skin to my collarbone then I could feel 2-3 lumps on my left collar and not my right.

But one day I checked under my collarbone and felt something.. And with the slightest touch a obvious lymph node was found! It moved on top of my collarbone and then behind it, but will always come back and rest under my collarbone (infraclavicle area) it was the strangest thing! And it's clearly visible when it slides on my collarbone. And I obviously freaked out and went to the doctors once again.

Again 2 of them shrugged it off and basically said its nothing, even though it's clearly there and I have all these symptoms that I link it to this node.. I've even had one blood test which showed low white blood cells.. I finally prompted one doctor to do an ultrasound so I did, it was so hard for him to get a picture cause it was in an awkward place for a node and every time the wand went on it, it would slide away.

All these symptoms and now back and rib pains, collarbone lymph nodes and anemia makes me think something is going wrong with my body.. sad

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  • Posted

    Hay i have exsact same terrible abdominal pain nausea n swollen painful nodes all over etc for 2 1/2 years getting progressively worse, please let me know how you get on as I cannot seem to get through to doctors and I'm incredibly concerned as I've become so I'll x

  • Posted

    I’m reading this like a worried person becAuse I have a superclavicle lymph that is swollen. I can’t find anything positive on this. Thoughts anyone ? Did all of the posters on here have superclavicle lumps?
    • Posted

      After reading all of the posts on this forum, I have mixed emotions. I know what everyone is going through as I've also been going through a living hell the past several years. I wound up having to have a hysterectomy, I was put in the hospital to wait for the surgery, so I was in the hospital for almost a month. Then 3 months later I had my gall bladder removed, hoping these two surgeries would end all of the excruciating pain that I'm going through and of course the nay sayer doctors would rather demand that you take antidepressants and pain killers. I am currently on 8 different medications per day, and still live in hell.  I had finally found a good doctor and surgeon in the last 3 years, but had to move to another community to start this idiotic doctor visiting all over again. I have swollen lymph nodes behind both ears, right armpit, groin and have now found a lump on my right shoulder. I asked my new doctor if he could refer me to a surgeon to do a biopsy, he said no doctor does such a thing on lymph nodes, I then requested to have a full body scan and was told there is no such thing. Well this doctor is incompetent, because I read up on who does biopsies on lymph nodes in my community and then I went to a lecture on diagnostic imaging and low and behold there is one called a PET scan. So I'm calling this doctor on his misinformed information. I have been living in hell for the past several years and have always been upfront and truthful in regards to the constant, chronic pain I'm in 24 hours a day, seven days a week for over several years. I have also asked to be tested for Lyme disease - no such test - oh really. I've been in direct contact with white tailed deer that carry the tick that causes Lyme disease, they had surrounded me while I was sleeping in a chair, they were rubbing up against my arms and legs, I was petrified to move. But this isnt all. A year ago October the right side of my face was in a lot of pain, finally went to see dentist who couldn't find anything wrong, but gave me antibiotics which seemed to have tamed the beast, then the following November I again woke up in excruciating pain on right side, so I took Tylenol to no avail, the next morning I woke up and only the right side of me face was badly swollen, - I took photos and show all doctors my face - went to see my gp who then demanded I get to the hospital immediately, he thought I had a stroke, the way I was talking, droopy mouth, etc. At ER 5 doctors saw me, CT scan done on face, cat scan showed swollen glands, a stone on left side of face. My parotid glands swollen, had lots of blood work to figure this out and hopefully put the pieces of the puzzle together. So the blood work comes back as saying that at some point I had mono -no idea on how I got that as my spouse is clean, then diagnosed with Sjögren's syndrome which is an autoimmune disease, it attacks the saliva glands and tear ducts, then will start attacking all moisture producing organs, then I found a mole in the worst spot imaginable, that came back as cancer. They felt they got it all removed and felt that no further treatment was necessary but to watch as this type of cancer has seeds that can spread - oh great. Then I had an ultrasound done on the gland on the bottom right side of my face, yeah it's a swollen gland, then sent to an ENT, who was snarly at me and kept telling me that CT scans don't lie when it comes to sinuses. My right sinus is persistently blocked also. This ENT wants my new gp to send me for another ultrasound just below my ear as this is also swollen, so I go back and see the gp for this referral, I'm also having issues with putting pressure on my left foot, this has been going on for years. So as to date this has been the findings: high blood pressure, sleep apnea, sliding hernia, acid reflux, Sjögren's syndrome, lesion on right side of skull, swollen lymph nodes which are extremely painful behind ears, face, armpit, shoulder and groin. Also have ostiarthritis on right big toe, and now I have one toe that now swells up so bad, but only to the joint.  I suffer from chronic pain, chronic fatigue due to the Sjögren's, the pain keeps me up a lot. And now I'm struggling with these new doctors who tell me I should go to work it will take my mind off of my pain. As far as I'm concerned I will continue to doctor shop to have the right tests and procedures done until I get my answers and feel better, sorry this is long winded, I hope that everyone gets the correct answers that we all deserve and not be swept under the rug by doctors who could care less. Are these doctors feeling as though they're being intimated because they've never had a patient with an illness they know nothing about?

       

  • Posted

    Hi! I know this is an old post but I have the chain of small nodes on my neck, one or 2 on the other side and also lots in groin area. I went for a needle biopsy but they wouldn’t do it because they said they all look normal and not reactive... I am thin as well and they tried explaining everything js ok some people can feel theirs but I still second guess everything. Been to ent, primary.. so many appointments and so much stress and anxiety! Did anything ever come of your nodes? How are you doing?!

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