Hello venus989

I can sympathise with your frustration. I too went to the Dr with shoulder pain and was referred to physio. It hurt like hell so I paid to see an Osteopath who quickly picked up on swollen lymph nodes on my collar bone and under my arms. I told the Dr who referred me urgently for a scan and biopsy. This pain started in July and since October I've had chest and neck ct, us with biopsy, chest xray, mammogram, pet scan, endoscopy, colonoscopy and another abdominal ct next week. They know now that my lymph nodes have secondary cancer cells from the biopsy but they haven't found the primary source yet. I'm in a lot of pain in my shoulder and arm but am hopeful the last scan of my "offal area" will show the primary tumour so I know what we're dealing with and can have treatment. 

Surprisingly enough I feel well in myself. The tests can be worrying and I've been sent via haematology, ent, breast clinic, back to ent and finally landed at gastroenterology, which I'm now assured is the correct route for people in my situation. The waiting for results is very stressful but remember, most people come out the other end with a good result, you just have to ride the waves. Good luck and please take any scans or biopsies offered for your own peace of mind. Xx

Hi,

Thank you for your reply. sorry it's taken me so long to come back. I suppose I was again hoping I'd get a magic fix. 

I hope you've started making progress! 

Since my last post I've had an x-ray of the shoulder which the Dr wanted to check in her words "nothing was going on in the chest" the results I got just said "joint bone appears normal NFA" 

Obviously I've now had to.make another appointment and wait for it as an unfruitful x-ray has not helped me. 

I now have: pain on the left side: back of tongue/ tonsil area (I have no tonsils) paindown my neck, in shoulder, across clavicle in armpit and sometimes into top of breast. 

Interestingly there are no massive swelling or anything glaringly obvious just immense pain. 

I'm at a point where I feel its clear it's something bad and the more time it takes the worse I am getting. 

Any advise on getting the GPs to speed up? It's been a year since this started. 

Hi!

Since I had been trying to get help with this since Jan 2019 I couldn't keep my life on hold. 

The day before I got my MRI appointment through I found out I am pregnant. The imaging team refused to do the MRI. 

My GP then said he wanted a Ultrasound but put extensive notes of the areas, swollen node in neck, SC joint, Armpit and AC joint. Sadly the technician only check AC joint and tendons which all came back fine. 

I am now left still with the pain/ache the same swollen node and clueless. My GP said there's no reason why an MRI can't be done in later pregnancy so we are aiming for a scan may onwards. 

Sorry I couldn't she'd any light for anyone but I'm still in the same position.

Hi,

I found your post when I Googled tightness in throat and collarbone area and I have read all the posts on the thread so some of my "symptoms" appear to be the same.

Having been very fortunate with good health for pretty all my life until now (I am 63), I have found the last 10 months or so as frustrating as your own experience seems to have been. My GP has a very pleasant manner, but I haven't been impressed by either of the two specialists I have seen to try to get to the bottom of the aches that I have had in my chest and arm areas. I have had blood tests done and a CT scan as well as an X-ray - the CT scan I had to pay for myself as I wanted to know rather than bother the NHS during the pandemic. 

My doctor has tried to palm my "symptoms" off as anxiety which slightly annoys me as I am pretty certain they are not ( I have seen other people comment on this diagnosis being used when doctors don't have an answer). Like you, I just want to know what's wrong and then I can deal with it - or not! I find it odd that diagnostic technique seems not to have advanced the way I would have expected - that probably comes from watching the TV series House again recently! 

Anyway, I thought I would share with you that you are not the only one frustrated by the lack of medical expertise.   

I hope your pregnancy is going well.

Regards

Hi,

yes I am another one, had pain in chest all on left side, soreness on left side of throat, pain in my back and under armpit, swelling on colour bone and when I sit my left arm feels like it gets slight swelling that goes into my three fingers starting with the little finger.  I have also pain in my hip at times to, but not sure if this is related.  I am 49 years old and now being told to go on HRT as sometimes people complain of aches and pains when on the menopause.  I don’t understand either I have MRI scan of my back and pelvis (which I paid for) nothing found, CT of my chest nothing found, my shoulder nothing found, also neck which their was a pinched nerve but that was found back in 2019, and they say that wouldn’t  be causing all these symptoms .  It feels like someone is stabbing a stick in my chest and neck.  I have been suffering for the since 2019 to!

Would love to know what it is? 

I feel all your pain to!

Hello

pkease can you tell me if you have been diagnosed with anything or if the swelling eventually settled ? I have exactly the same symptoms that you describe ! I literally developed swelling above both clavicles overnight 3 weeks ago ! Lots of strange sensations . Had a mammogram (that was already arranged ) ultrasound, bloods chest X-ray all normal apart from X-ray shows soft tissue swelling ! Have a ct on Thursday but only cause I'm a nurse & have pushed for it . Drs all said there is no lymph nodes and they basically not worried but even so no one can tell me what it is or if it will go away ! Thank you in advance 

Hey . So still have swelling .. no one seems to know why . Have endocrinologist appt in feb 2022 . Waited so long .. cortisol levels are high .. so think along the lines of an auto immune disease related. Lymph gland always up and down still just lots of waiting for appts still will let you know what happens xx 

Thank you for your speedy reply , well at least it sounds like anything sinister is ruled out, I'll let you know how my ct scan goes x 

That would be great thanks .. it's taken me ages to get anyone to listen .. I work NHS abut had to do lots of investigations myself and paid private .. for things as GP had not interest what so ever because I have fibromyalgia they just kept putting it down to that and was not interested. So frustrating.. x are u  UK 

Yes it's a nightmare isn't it especially with Covid situation , I'm in the UK x

Hi there I hope you are well. Did you ever get to the bottom of the swelling. I have what the GP calls a soft tissue mass over the collarbone and she found a breast lump. She couldnt say if the two were related but I'm really worried x

Hi, I have just been reading through all these threads. 6 months ago I started with neck pain in the right side, got told it was fybromialgia which I am not convinced!! The pain got worse and swelling and it's moved into my collorbone, front of neck feels swollen, my collorbone area on the right is swollen, I have pain in my arm pit and going down my right arm. I am so sick of being fobbed off all the time, it makes me feel ill. Iv been told my the in house physio it's a pain disorder and gives me pain killers and leave it like that! 6 long months of pain and agony everyday and I just can't deal with it any longer. I called back last week and demanded for answers, they sent me for an x-ray and sending me an appointment for a scan. No pain relief touches the pain and the swelling has been there for 6 months! I'm worried sick and just thinking the worst. It's 2-3 weeks wait for results!! 

Hi, I have just been reading through all these threads. 6 months ago I started with neck pain in the right side, got told it was fybromialgia which I am not convinced!! The pain got worse and swelling and it's moved into my collorbone, front of neck feels swollen, my collorbone area on the right is swollen, I have pain in my arm pit and going down my right arm. I am so sick of being fobbed off all the time, it makes me feel ill. Iv been told my the in house physio it's a pain disorder and gives me pain killers and leave it like that! 6 long months of pain and agony everyday and I just can't deal with it any longer. I called back last week and demanded for answers, they sent me for an x-ray and sending me an appointment for a scan. No pain relief touches the pain and the swelling has been there for 6 months! I'm worried sick and just thinking the worst. It's 2-3 weeks wait for results!!