Still searching for diagnosis

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Still searching for diagnosis

by Mkats on Wed Oct 25, 2017 07:00 AM

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I'm new here and needing support.  I'm a 47 year old mother of 4 (ages 21, 19, 17, and 2).  On August 6, 2017, I woke with a horrible headache on the left side of my head.  This was an unusual headache for me as I normally get migraines on my right side.  After 8 or 9 days with the headache, which was accompanied by ear pain, I went to the ER.  They did a CT scan without contrast (due to my iodine contrast allergy) and said all was normal.  My headache eased up over the next few days but the ear pain continued to come and go.

On September 15, 2017, I woke with a very sore neck and collar bone on my left side.  It felt as though all of my lymph nodes were aching.  After several days of this pain accompanied by ear pain, I went in to be checked figuring I now had an ear infection.  Turned out my ear looked great and they had no answers for my neck pain.  They did a chest xray as I had a little cough as well, which came out normal.

Over the past month I have seen a family practice doc who said I probably have TMJ but should see an ENT to be certain.  I saw the ENT on Oct 5th.  He put me on Cefdnir for possible salivary gland infection or sinus infection.  Meds did nothing!  He then ordered a neck CT (without contrast due to my allergy) to check for salivary stones.  The CT came back normal, noting some bilateral oval  cervical chain nodes that appeared benign and mentioned no neck masses.  After the normal CT, the ENT's nurse suggested I see a neurosurgeon to see if he could get to the bottom of my problems.  I don't believe my symptoms point to a neurological diagnosis.  I have a sore spot on either the way back of my tongue or throat (which is not visible), my ear aches, my neck hurts terrible, my voice is hoarse now and then, and I have a chronic non productive cough. Ive also had a few episodes where I feel like my food is getting stuck.  Speaking of which, I went to ER on another occasion recently when I thought food was stuck.  The ER doc recommended I have an Endoscopy to check my esophagus ASAP.  I had that done a week ago and all appeared normal... no narrowing, just esophogitis that he prescribed Prilosec for.

So, I finally decide to go to my PCP,  who was out of the country for first half of my illness but has since returned.  I don't know him well as he took over for my PCP who retired a few years ago, but thought he might be a good source of help sinve  he's an interest.  As soon as I started telling him about my ER visits, he immediately quit listening and blamed all of my symptoms on anxiety :(  In addition to my pain symotoms I told him I wake up soaked every night from night sweats and he said that is anxiety too.  When I told him I have lost 16+ pounds in less than 5 weeks, he said that was good.  He tried to tell me that my normal neck CT was proof that I do not have cancer.  I told him that radiologist told me that I needed contrast to be certain.  Anyways, he wants me on Xanax for the next 9 days and wants to see me for a follow up in one month.  

I really feel like something is dreadfully wrong and don't know where to turn now.  The pain in my neck is horrific, unlike any pain I have had before.  And it is not normal to have ear and throat pain for this long.  What would you all do if you were me?  I realise my anxiety is probably making me feel worse, but I don't believe it is the underlying cause

I should note, my first 2 visits were to the ER because it was most convenient.  My husband owns and operates a restaurant so sometimes I'll go to ER late at night after he gets off of work rather than taking my toddler to a doctor's appt during the afternoon.

Any and all suggestions are welcome.  Thank you..

RE: Still searching for diagnosis

by JohnnyO on Wed Oct 25, 2017 02:45 PM

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Are your kids in college?

FWIW, as I was reading I came to the same conclusion as the internist:  anxiety.  And either as a cause or an effect of your anxiety, it sounds like you might be sleeping in an awkward position that is aggravating your neck/ear/jaw/carotid, etc...

It's certainly not a typical cancer presentation, and the anxiety makes more sense to me given your symptoms (some coming and going).

Contrast CTs can be done with pre-meds to offset your analhylactic reaction to iodine, but the docs don't seem to think you need that.

Try the Xanax, adjust your pillow and the side on which you sleep.

My 2 cents.

RE: Still searching for diagnosis

by Mkats on Wed Oct 25, 2017 05:18 PM

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Thank you for your response.  I hope you are correct.

My 2 odest dons are away at college, my 17 year old son is a junior in high school, and then I have a toddler. 

My neck, throat, and ear pain are constant. So much so that I can't sleep due to pain.  The ear pain came and went for the first month.  My hoarse voice comes and goes throughout the day but my cough stays steady.

RE: Still searching for diagnosis

by Fur-Ever-n-ever on Wed Oct 25, 2017 05:34 PM

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Look up the symptoms for Trigeminal neuralgia.  A friend of mine has this and kind of sounds like that might be what you may have.  Tell your doctor, you want to be checked out for this...  There is no cure, but last time I talked to her, she was going to try a new surgical procedure to see if it would help.  Good Luck to you!

RE: Still searching for diagnosis

by Mkats on Wed Oct 25, 2017 08:25 PM

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The ENT got me in this morning after I complained of my tongue going numb. He did a bunch of blood work and ordered an MRI of my neck, cervical spine, and brain.  He mentioned nerves in my cervical spine.  My pain is dull and constant, not sharp and brief so Who knows??  He also looked down my throat with a mirror and said my lingual tonsil on the left is enlarged. He didnt feel an antibiotic would be helpful since I just finished Cefdnir.

Im still terrified that I have cancer in the base of my tongue due to all og my symptoms.  Plus, it hurt like crazy when he lifted my tongue up on the left side.

RE: Still searching for diagnosis

by peggyznd on Thu Oct 26, 2017 07:20 PM

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/with the mix of problems you have had, and the attempts to treat it with antibiotics AND the fact that the tests you have had are limited due to your allergy, you are very smart to consider the possibility of a cancer. If you possibly can, gather ALL the records from your several visits, as the mix of approaches, and the lack of a long-term history from the retired practioner may confuse the issues. If you can indeed get into an MRI, be certain that it is as extensive as possible.  The ENT doctor is obviously concerned, as are you.  

Below I have added one link which offers a free medical librarian search which might be very useful to you. The second link will help you organize your symptoms, trigger a few more questions, and may help you explain your history to the doctor. THis is a service supported by a group whose concern is missed diagnosis, and recognizes that getting a diagnosis can take some time.

http://www.improvediagnosis.org/page/ExpertHealthSearch

http://www.improvediagnosis.org/page/PatientToolkit

Do NOT take stress, anxiety, etc as a diagnosis, nor the 'stressed-out mother' phrase as an explanation.  Anyone who has a long period of unexplained and serious-soulnding symptoms is stress about that--far more than toddler care and real life would create!

PeggyZ

RE: Still searching for diagnosis

by Leyamichelle on Thu Oct 26, 2017 11:26 PM

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I'm so sorry you're having these problems. Could you get an appointment with an oncologist? He may be able to find out if you do have cancer or not. Good luck and please keep us updated. Judith

RE: Still searching for diagnosis

by Sdurnell on Sun Oct 29, 2017 08:30 AM

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A single enlarged tonsil can be a sign of cancer.  It sounds, though, like your ENT is being very thorough so I would stay with that doctor.

Part of your problem might be that your records are not in one place with one or two doctors.  Going to the ER might be convenient, but besides it being very expensive it can lead to confused records.  And you are likely being seen by different doctors, and not specialists, each time.  Sticking with one or two is likely the right thing to do.

An MRI should help, and no contrast is required.  The only other things I think might help would be a biopsy or a PET.  In my experience those are the best ways to diagnose cancer.  The radioactive dye for a PET is different than the contrast for CT scans, so maybe you can tolerate it.

Best of luck to you.

Susan

RE: Still searching for diagnosis

by Mkats on Sun Oct 29, 2017 09:17 PM

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Thank you for all of the replies.  I was notified on Friday that my MRI date and time are this Wednesday at 9:15..  The scheduler said it is for a brain and cervical spine MRI.  I called my doctor and said I really wanted my neck, throat, and especially my tongue looked at considering most of my achiness is in my tongue and neck.  He said that would be seen in the MRI as well.  Is this correct?  He seems to feel I'm mass free based on my normal CT without contrast.  I believe he's checking my brain to rule out MS since my tongue has gone numb a few times and checking my cervical spine to see if any of my pain is coming from a nerve.

From your experience, if there is cancer present in my tongue, will it show up in the MRI?  Im terrified of the contrast, even though I know it is different than that used for a CT.  I'm sure it will cause a panic attack once injected due to my horrific fear of another anaphylactic reaction.

I just looked up the Head and Neck Cancer department at Huntsman Cancer Institute. It appears I can request an appt without a prior cancer diagnosis.  I'm not sure if I should go that route yet or continue with my present ENT?  Thoughts?

Has anyone here had an achy feeling at the base of their tongue versus a sore spot?  When I Google I can't find any symptoms similar to mine.  My neck pain is awful as well... it radiates from under my ear to under my jaw... almost directly below where my tongue aches.  I also have neck pain that goes down towards my collar bone as well.  Being out in the cold really intensifies the pain. And of course my ear aches on and off which i believe is referred pain.

RE: Still searching for diagnosis

by Sdurnell on Sun Oct 29, 2017 10:29 PM

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I can't answer most of your questions, but it sounds very worrying that you expect a panic attack.  Such an expectation is bound to affect your experience.  I have had one panic attack in my life, and it was during my radiation.  I was given a prescription to help control my anxiety (which I later found out was due to an antidepressant prescription that I'd never had trouble with in the past).  Just having that medication with me was very calming.  If possible, brainstorm some ways to calm yourself and implement all that you can, since being prepared is a big part of dealing with it.

If your team understands your fears, and the remote possiblitiy of a reaction (which is always present for every patient who gets such an injection), they may be able to help calm and reassure you as well.  I'm certain they have procedures in place to deal with such reactions and it might help you to understand what these are and how they could work for you.

Are you sure they will be using any kind of contrast?  I have never had an MRI, but my daughter has had several brain MRIs for her neurological condition, and they have never involved any injections at all.

My thoughts on changing ENTs at this point are that it might unnecessarily complicate and delay your diagnosis, whatever it turns out to be.  However, once you get one, you might want to go elsewhere to confirm it--second opinions are hardly ever a bad idea.

Lastly, I'd like to point out that in my 7 years on these sites I've never seen a H&N cancer with your presentation.  This is not to say it can't happen, just to emphasize that you are very likely dealing with something other than H&N SCC here.

All the best,

Susan

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