I’d suggest you get a cancer scan. They never found anything on my scans untill they did that
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I am trying but they are not taking me seriously and are saying something would have shown up on my MRI scan. Any detail on the symptoms you had, the areas and how they progressed would be really helpful.
You need a cancer scan They did not find mine either after 5 different scans and MRI’s Pay for it if you have to.
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So i’m UK based, I’ve pushed and pushed and requested a PET CT scan the past month, both through the NHS and I have requested to pay for one privately and have been rejected by several doctors. They aren’t prepared to do one and say they will not do one unless they diagnose cancer (usually by lymph node) and are looking for the primary tumour. They stand by the fact that my lymph nodes remain under 1cm, and look normal (reactive) so are unable to biopsy.
I have been offered a repeat MRI to compare against my one last year which should be within the next month. I’ve lost all hope in getting a diagnosis, it’s a year on and the tongue pain is getting worse, I have chronic jaw and neck pain, I have had lymph nodes constantly appear over a year period: left supraclavicular collarbone, right jugular, central hyoid bone and more recently right under my jaw at the back of my tongue EXACTLY where the pain is. I’ve been on countless nerve tablets, antidepressants, seen a physiotherapist, mental therapists, had a mouth guard fitted by dentists incase i’m clenching my teeth. I’ve done everything I physically can and absolutely nothing has helped in the process.
The ultimate problem is I am a statistic, because I am only 25 every single doctor/professional has told me it is extremely unlikely that I have cancer.
I don’t understand how someone who developed a squamous cell papilloma at the back of his throat which is more than likely caused by HPV, developed chronic pain, constant lymph nodes popping up and abnormal looking tissue at the back of the tongue all on the same side is not a concern one year on with worsening symptoms. It’s too coincidental and even if it isn’t cancer, something has got to be causing all these symptoms at the same period of time.
Truly feel like I am out of options and will not be taken seriously unless a lymph node swells right up which it seems to do in most cases or something glaringly obvious appears.
DSP17 - I am so sorry to hear about your situation. I will say that because of the way ES irritates nerves, some people do experience reactive lymph nodes. Your case does seem extreme & more concerning since you’ve already had a cancer diagnosis. Getting a CT scan of your neck from hyoid bone to skull base would help define whether your symptoms are related to ES. I understand you’re trying to get someone to refer you for one.
I can’t imagine your level of frustration as you know your body & certainly can ascertain when something isn’t right. The best you can do is keep asking for the testing & diagnostic scans you feel would help. Have you tried getting a referral to one of the doctors on our list in the UK? That alone might help though I know it’s another hurry up & wait situation for you.
I’ll pray foe you to be able to get the help you need.
Sorry if I have confused the issue … I haven’t been diagnosed with cancer. I feel like that is obviously my most concerning issue and I don’t feel like it has been ruled out yet through the investigations I have had.
I have also mentioned eagle syndrome recently, I have always said if it is not cancer something is still not right and I did mention that from my research a CT scan would be better to detect this. The doctors have told me because of my dental fillings the CT will not produce as accurate images as the MRI and they will check eagle syndrome on my MRI (which I don’t think they’ll have much luck with.)
Since they’re going to compare my MRI to the one I had last year i’m confident there will be significant differences (definitely the lymph nodes as they weren’t there).
If I get to a stage where I am confident it is not cancer I will probably look into eagle syndrome further as a lot of my pain does centralise towards the hyoid bone.
Thanks as always for your responses and support.
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Thank you for the clarification. Your situation is still frustrating but I’m glad someone is at least comparing MRIs. I hope that produces some information that will enable you to move forward w/ your care.
I’m sorry this must be incredibly frustrating for you. Do you have any other symptoms of cancer? Weight loss, night sweats, fatigue?
I lost a ton of weight about a year ago and my doctor freaked out and sent me for a bunch of scans, but I had been complaining for years that I’m not okay and it wasn’t until I lost nearly 50 lbs (that I couldn’t afford to lose) that she got concerned. If you have some of those other symptoms it may be worth mentioning them.
Another tip I’ve heard that works here in the US is to ask for the test you want and if the doctor says no you ask them to note your chart that they are refusing the test. I’ve seen this mentioned a lot on another forum I’m on and it seems to have a high success rate.
Just because statistically it’s unlikely you have cancer does not mean you can’t have it. Of course you know that. I have so many rare or weird issues. Eagles is rare and I also have something called Superior Mesenteric Artery Syndrome. Talk about rare!! So keep fighting. You will get your answers.
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Thank you for taking the time to reply to me it really means a lot.
I had extreme tiredness but found out I was vitamin D deficient a few months ago and that seems to have improved.
Normal blood work, no weight loss, weight gain as I am on an antidepressant Mirtazipine it’s the only thing that helps me sleep but piles on the weight, I am looking to come off this soon. No night sweats.
My other symptoms on top of the lymph nodes; jaw/neck pain and constant tongue ulcer feeling pain are: constant mucus/throat clearing. I get headaches every other day. Ear pain on the left that feels like an infection but isn’t. A sore throat on the left that comes and goes. A minor symptom I would mention is ear ringing which isn’t too loud and only happens now and again.
I just feel at such a loss I feel like doctors have decided before they see me and when I get investigations they discharge me after the results instead of seeing me.
I just want one normal day, one. It’s been a year and I’ve had to live like this everyday with it just getting worse 
I also have facial pain
I totally get it. I’ve been sick for so long I hardly remember what normal feels like. I had surgery and have yet to really see any improvements and now have additional issues from the surgery. It might be good to see if you have eagles though. Your symptoms don’t really sound like cancer but I don’t know much as I’m not a doctor. I had swollen nodes on the side where I had surgery. One was removed during surgery and the other is no longer enlarged.
Have they tried nerve pain medication? That’s my next step if I can’t get better naturally.
@Dsp17 - All the symptoms you’ve just described (including facial pain) are symptoms we have noted w/ ES. There are some other syndromes that can have similar symptoms i.e. Hyoid Bone Syndrome & Sjögren’s Syndrome.
Jules wrote several extensive posts about ES symptoms & what causes them. She backs up her information with links to published research papers thus her information would be worth printing off & taking to a doctor’s appt. where you will be discussing ES.