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Sjouren's, Sarcoidosis, Parotid tumor any other ideas?

(14 Posts)
Apryl4 Tue 26-Nov-19 16:29:34

ryl4 Tue 26-Nov-19 15:00:01
Hi - I have an incredible sore throat and dry cough and sometimes pain in my chest. My voice is hoarse and the hoarseness and pain in my throat increase when I speak more than a minimal amount. I sometimes have pain and burning in my upper chest. My right ear is consistently in a large amount of pain what usually increases after eating, my left ear hurts now and then. I had a neck CT and all that showed with several swollen lymph nodes and a thyroid nodule. The ENT says that he can see signs of reflux when he did the scope and believe strongly that I have a TMJ disorder. as recommended I followed up with a dentist that says I have absolutely no signs or indication that there is anything wrong with my TMJ. He also ruled out salavary stones as I seem to produce saliva properly.

I'm having a CT tomorrow. All of my blood work(ANA etc) is negative for auto-immune. These symptoms have persisted for at least 7 weeks. I have also lost a significant amount of weight. Is it still possible that I could have Sjourens based on my symptoms and will the CT confirm or deny it? Sarcoidosis? Has anyone had similar symptoms and have been diagnosed with anything?

DoraMarr Tue 26-Nov-19 16:37:32

I don’t think it’s a good idea to ask for diagnoses from unqualified people, nor to google symptoms and try to diagnose yourself. You say you will have a scan tomorrow, so I should try to rest today and not think about it (hard, I know.) My doctor says that every symptom can be the sign of something serious, but rarely is. Look after yourself, and try not to worry. I hope you are reassured after your scan.

BlueBelle Tue 26-Nov-19 16:43:24

I so wish people spoke English I have no idea what TMJ or ANA means
I agree with dora no one on here can give you a diagnosis wait until you have your scan tomorrow then the doctor will have a clearer idea hopefully
Good luck hope all becomes clear

janeainsworth Tue 26-Nov-19 16:54:09

I don’t think it’s a good idea to ask for diagnoses from unqualified people

I agree, and qualified ones wouldn’t make a diagnosis from an online description of symptoms either.

OP, I’m afraid you will have to be persistent with the consultants you see and tell them how worried you are.
I hope the scan tomorrow clarifies things for you.

Elegran Tue 26-Nov-19 17:01:01

Apryl4 Your primary care doctor can answer your questions far better than anyone on Gransnet. He/she has studied medicine for many years to qualify and to be able to take the list of signs and symptoms you gave, to examine you and consult the results of the tests and to discover what may be wrong with you.

Are you in the US? Your post sounds as though you are taking yourself on a do-it-yourself round of all the specialists you can find in a search for a diagnosis. This is not how I would go about it.

Farmor15 Tue 26-Nov-19 17:06:45

Agree that unqualified people can’t diagnose but OP just looking for anyone else’s experience.
My experience was enlarged thyroid with nodules causing pressure that spread to side of neck. I also sometimes got sharp pain in throat and difficulty swallowing. CT scan might show if thyroid is source of problem. My symptoms disappeared when thyroid was removed.

BlueBelle Tue 26-Nov-19 17:22:19

Why have you started another thread entitled Hekp asking the same question ?

Apryl4 Tue 26-Nov-19 18:57:06

Farmor15 - How large were the thyroid nodules and how did they determine that that was the cause?

notanan2 Tue 26-Nov-19 19:24:19

Thyroid nodules dont necessarily give you any symptoms at all except difficulty breathing if they get so big they crush your wind pipe.

Depends of course what the nodule IS. Nodule doesnt mean much. It just means "a something"

MawB Tue 26-Nov-19 19:39:27

Ear infection?

Apryl4 Tue 26-Nov-19 19:43:42

No ear infection, they are clear, no strep throat. Have been on 2 different antibiotics and 2 different steroids, neither have helped sad

Farmor15 Tue 26-Nov-19 19:56:34

I was initially diagnosed with overactive thyroid and put on medication. I was on and off it for years, but my thyroid was gradually enlarging. My GP referred me to endocrinologist but after 3 years waiting (I’m in Ireland), I finally went to him privately. He referred me for various tests, including biopsy of nodules that could be felt. But he didn’t recommend surgery. Meanwhile, appointment with surgeon came up (separately referred by GP). Surgeon could feel nodules and said surgery was essential as otherwise pressure of enlarged thyroid could strangle me!

It was only when I had CT scan prior to surgery that thyroid was measured as much bigger than it appeared, as it had grown down into upper chest.

Interestedly, neither GP nor endocrinologist had recognized the problems thyroid was causing, despite my complaining of intermittent pain and difficulties swallowing.

Farmor15 Tue 26-Nov-19 20:00:55

www.btf-thyroid.org/thyroid-nodules-and-swellingsleaflet
Some info here on nodules.

Apryl4 Tue 26-Nov-19 20:02:42

@farmor15 thank you. That is exactly how I feel, like something is choking me and putting pressure on my throat neck and ear. Hopefully the CT cab shed light on this.