Three months ago I started having a slight pain in both sides of my neck along with a tingling feeling and also numbness and tingling in my arms. I saw my doctor and he did not seem to worried but after 6 weeks he scheduled a MRI which showed nothing. Next step is to see a neurologist the end of June. However, lately the symptoms have changed and under my jaw constantly feels strange, like in the area where you would feel swollen lymph glands when you are sick. There is pain, nothing major and seems a little numb and tingling still and my one arm still feels funny. My head just doesn't seem the same, strange pains unlike a headache and sudden pain in my ear every once in awhile. Had a couple blood tests last week, nothing unusual. A vitamin B12 level scheduled for next week.

Question, I am curious if anyone had any of these strange symptoms? I feel like a hypochondriac but want to find the answer. Just after these symptoms started I had a tooth pulled and there was a big cyst under it that had actually ate away at the bone there. I just wonder if there was infection if it is still there and causing issues. The doctor say no connection.

Thanks for any input!!

The arm and tingling sounds neurological, also have you had your heart checked?

How old are you?

Which side?

Age 54 and pretty good health. Other than listening to my heart that is all that has been done. The pain and strange sensations are on both sides. I would let it go and not worry but for something to come on overnight and not let up for 3 months seems like there should be a definite cause.

The pain almost sounds like something at the bottom of your jaw. Seeing as you are scheduled to visit a few places to track this down, perhaps a visit to the dentist is in order? This could be referred pain from something going on with your teeth or mouth. While you are there - make sure they do an oral cancer screening!

Donna

Wondering,

This could be a myriad of different conditions in the head and neck...however...just for peace of mind get an appointment with an Ear Nose and Throat Surgeon and ask for a scope of your Oropharynx area, specifically your base of tongue & tonsils.

Understand that your cranial nerves are 12 paired nerves in the head and neck area, and are very closely tied together. Your tongue is actually innervated by 5 of these cranial nerves, but most associated with the CN-IX nerve, also known as the Glossalpharyngeal nerve. A tumor in the base of the tongue could cause the issues you are describing, even the nerve sensations and would be difficult to catch with an MRI.

The reason I even point this out is that the fastest growing subset of oral cancers are HPV related and will present in either the tonsils or base of tongue, and as we on these forums know all to well, 80% of the population will have contact with at least one form of HPV by the time they are 50, so it's plausible, if only a long shot, that you may have a tumor presenting in this area.

Get it checked out, even bring my write up to your ENT and have him or her contact the Oral Cancer Foundation for more information on this, but be your own advocate and continue to look for answers.

I hope this helps, but just remember....you DON'T have cancer unless a biopsy says you do as biopsies are the only way to tell if you have cancer, imaging won't.

Eric

Thanks for the input. I just wish I would have one day without any strange symptoms. The last couple days the pain is more in the middle under my chin/neck area. Also feels like a sore throat but not like an usual sore throat on the inside. More like the muscles or something. I went to the dentist right after all this started and then to the oral surgeon and both said nothing with my teeth could be causing these problems. I have an appointment on the 22 with a local ENT. Don't know if I'll be brave enough to suggest this seems like it could be something serious. Doctors don't deal well with patients who try to self diagnosis.

Well I was brave and tried getting an appointment with a ENT at a CCC and no luck. After listening to my symptoms I was transferred to a triage nurse who again listened to my symptoms and said there was nothing the ENT department could do and that I should wait to see a neurologist the end of June.

I guess I'll have to wait and hope it is not anything otherwise I'll regret not doing something sooner but I tried my best. Even suggested something serious but they didn't seem worried.

Still wondering with no answers and the strange and varied symptoms keep appearing. I did see a local ENT about 8 weeks ago and unfortunately he was very brief in his examine, no scope and like all the other doctors have said "see what the neurologist thinks" the end of June. That day at the ENT I thought the side of my neck felt strange and by evening I had an extreme burning pain, like where my carotid artery is. Rather than drive home an hour away not knowing what was going on I went to the ER with my blood pressure up to 179, very high for me. They monitored me for 2 hours and found nothing so sent me home to wait for the magical appointment with the neurologist.

My appointment with the Neurologist was disappointing. He did an EMG and a MRI of my head and concluded I have carpal tunnel in one arm and damage in the C-6 or 7 that accounts for the tingling and numbness and pain in both arms. I asked about the issues with my neck/throat and he said it may be thyroid disease and left it at that. Told my primary doctor that and he says "no" so no one is trying to get that figured out. Unfortunately he is leaving this month and the sleep study guy is taking over and I was told to come back in 2-3 months.

4 weeks ago I had another strange thing, my equalibriam was off, seemed like I had vertigo but it only lasted 36 hours. Now my latest is a white spot on one tonsil, sore throat, and I noticed when I look in my mouth my tongue at the back of my mouth is very uneven, looks low on one side and high on the other. (Was tested for strep and that was negative, also negative for Lymes and thyroid is ok) They checked my arteries on the sides of my neck with an ultrasound and that was good, no plaque.) The sides of my neck still feel like I have swollen glands at times, last night one side was burning. Have a pretty regular tingling and numbness in my chin and under my jar and up into my face at times.

Thankfully I was able to get a referral to a the U so have appointments in 2 weeks for an ENT and a neurologist.

I still don't believe that I could have 3 separate issues come on overnight and they are being diagnosed with separate causes. I really think they are all linked together and have something to do with my neck/throat area.

Any ideas what I should ask them to check next or what this could be.

Thanks so much. You are a great group of informed people!!!

PS After re-reading my post I would think I sound like a hypercondriac but for someone who has never had much in the way of medical issues I really think it is my body trying to tell me something is not right. I don't smoke or drink and am not overweight so I think that is the reason my doctor doesn't take me serious. He actually warned me that often people with these type of symptoms will have their friends and relatives questions whether it is all in their head so then they will get more symptoms. Well, I don't want any more symptoms I just want them gone so I can enjoy life. Running to the doctor so much has taken too much time already.

Hi, I don't know what treatment you had but the symptoms that you mention sound familiar (from my dad's case). I suspect that you might be experiencing Neuralgia.

You have mentioned Vertigo but you may have experienced Syncope. You need to urgently consult a team of Cardiologist and Neurologist. What you might be experiencing is initial stages of Neurocardiogenic Syncope induced by Glossopharyngeal Neuralgia.

In advanced stages you may experience recurring attacks of severe pain in the back of the throat, the area near the tonsils, the back of the tongue, and part of the ear.

I would tell you to see an ENT re the white spot on the tonsil and throat pain that has lasted for more than 2 weeks but you have already done that and more. Perhaps a new ENT?

Well I finally had 2 appointments with a larger facilty. No answers again. After filling out paper work as to why I was seeing the ENT (persistent sore throat and numbness in jaw along with sore glands on both sides from time to time) he started the visit with offering to cancel my appointment and save me some money. WHAT!!! I kept the appointment and he decided my sore throat is from acid reflux. When checking the symptoms for acid reflux I have none of them and a sore throat wasn't listed from what I read.

Just wondering if anyone with acid reflux has had a persistent sore throat?

Too bad I drove 3 hours each way for the appointments. At least I got some bargains shopping. LOL

Hi Wondering:

I've had a multitude of weird symptoms like you, and been almost evicted from some of the ENT offices - guess they think I'm paranoid too. Anyway, I did see a specialist at a University 2 hours from my house last week and he turned out to be not only an ENT doctor, an Associate Professor of Surgery, Laryngology-Bronchoesophagology. I went to him because I was having swallowing problems mostly, but other problems, some of which you mentioned. The only difference, and it may not even be a consideration, is that I did have oral cancer (tonsils) with my radiation/chemo treatments ending in 2/09. However, when I go to a doctor and they find out this, if they don't "see" something suspicious, they check no further and say my problems are from late after-effects from radiation. None, except this new doctor, has checked me for having something "normal" people have. Before I go to far, Wondering, have you had any taste problems, such as sour or putrid tastes in your mouth? Or, just the sore throat issue? Let me know, and I'll tell you (send you a PM) what this new doctor found (associated with acid reflux)that may be the cause of problems I am having, and have had for almost 2 years.
julieann

Just an update. Even though my primary doctor was convinced I needed to let this go, as in his words, "I have no life threatening symptoms" I did beg and was able to get another ENT appointment with a different doctor who did not suggest canceling my appointment so I could save some money. Finally, the third ENT did a scope and saw a lot going on in my throat and was able to schedule a CT with contrast that very afternoon. I have a week to wait so hopefully I hear from the doctor tomorrow, his nurse would only tell me there is inflammation in the nodes. I am optimistic but just want to be sure they are not missing something and want to get rid of whatever is causing all these symptoms.

I know the time frame for getting diagnosed is unbelievably long in many cases but I have found how long it takes just to find a doctor who will take me serious that something just isn't right.

Inflamed nodes can be a sign of an infection. Hopefully thats all this is and not OC. Wishing you all the best with finding out exactly what is going on.

Wondering, I just want to give you a big SHOUT OUT for persisting in getting the care you need and deserve. It infuriates me to see how often people have been given pat answers......I would much prefer my doc to tell me he/she just doesn't know than to have someone try to snow me into complacence.

I hope you get good news tomorrow, we are all pulling for you!

Glad you're getting lookd at and had a ct - next time ct results are usually available In 24 hours -

Better safe than sorry!

I went to 5 different docs and if I had stopped after 3 of them I would be dead today. The 3rd BTW is a well respected MO who actually shook my hand and said "Congratulations David YOU DON'T HAVE CANCER." My wife was the one that wouldn't let that go and tricked me into seeing doc #4, an ENT, who did a FNA and BOOM Stage IV SSC.

[quote=davidcpa]Better safe than sorry!

I went to 5 different docs and if I had stopped after 3 of them I would be dead today. The 3rd BTW is a well respected MO who actually shook my hand and said "Congratulations David YOU DON'T HAVE CANCER." My wife was the one that wouldn't let that go and tricked me into seeing doc #4, an ENT, who did a FNA and BOOM Stage IV SSC. [/quote]Thank goodness instances of missed diagnosis are infrequent but the topic does appear enough to be worrisome.

Isn't a trained ENT supposed to know what SCC looks like via a scope? How does one pass through several doctors and each misses the diagnosis?

I'm just curious as the words incompetence rarely is typed in posts here but one wonders why something not all that rare is just plain missed!!

I have serious doubts about some ENT's. When my husband was referred to our local ENT and saw a growth on his vocal cord he decided to treat it as a fungal infection although he didn't think that was what it was. (he had previously done a paper on fungal infections and I think he was just looking to find an example to go with it.) If it looks like cancer why waste 2 weeks instead of doing a biopsy to confirm either way. Especially since his voice was at stake and each week we lost I believe cost his more.

They say it takes an average of 9 months to be diagnosed with head and neck cancer, probably oral, orpharyngeal. It may takes a month from diagnosis of cancer to treatment phase or longer, in my experiences.

Total frustration!!!!!!!!!!!!! I finally heard back from the ENT's nurse and she said my CT came back normal. Conflicting opinion though because on Monday she said there was inflammation in the lymph nodes and today she says everything is ok. I questioned this and then she admits there is inflammation in the nodes. The ENT wants to refer me back to my primary. (He is the one that wants to just drop it since I don't have life threatening issues.) I asked, wouldn't an ENT be the one to see for throat issues and she is still insistent on seeing my primary since my CT came back normal. I asked about the red spots he saw when he scoped me (they were on my vocal cords and down my throat.) and she just dismissed them.

I asked about an antibiotic and she said no. I persisted and she said she'd check with the doctor and he said no!!

I am shocked that going to an ENT at a place where they deal with cancer has got me no where.

I guess at this point I need to just give up and wait it out. Maybe it is just allergies and will go away after the first frost. That still doesn't explain the numbness and tingling that has been going on in my jaw area for over 6 months.

Hi, I think you should get a copy of the CT report so you can see first-hand what it says.

Is seeing a new primary an option? It's disturbing that your current doc thinks his job is limited to addressing "life-threatening issues." That would be true in a trauma ER, not a primary practice. It sounds very condescending to me, trying to make you feel that your symptoms aren't important if your life isn't at risk.

Good luck, don't give up!

[quote=Mamacita]Hi, I think you should get a copy of the CT report so you can see first-hand what it says.

Is seeing a new primary an option? It's disturbing that your current doc thinks his job is limited to addressing "life-threatening issues." That would be true in a trauma ER, not a primary practice. It sounds very condescending to me, trying to make you feel that your symptoms aren't important if your life isn't at risk.

Good luck, don't give up! [/quote]

Damn right, Mamacita. Don't be bashful with it's your future at stake, fire your current primary and find one who is interested is your concerns.

I've done it many times, it's always resulted in a major improvement.

I cannot abide a medical professional who thinks her/his degree makes him/her the driver. You are paying them, and if they don't get that, stop paying that one, and find one who does get it.

Bart

Good Luck.

Do most doctors give antibiotics for symptoms of inflammation? If my report says I have inflammation of the posterior pharyngeal wall and inflammation in the nodes yet they won't give me an antibiotic, is this normal. Do these issues just go away on there own?

Also, has anyone has an ongoing numbness/tingling pain in the jaw area that just doesn't let up?

It has been

I would change doctors if one ordered antibiotics for simple inflammation.

Antibiotics should only be used for inflammation resulting from a bacterial infection that has been identified as being the actual cause of the inflamation.

Otherwise, all you are accomplishing is using Darwin to help you create a stronger, antibiotic-resistant bacterium.

I have numbness and soreness in my neck and cheek....a lot of swelling...I pray to god its just lymphedema...according to my family doc...my PET and CT came back clean...but I cant shake off this horrible feeling that something is wrong...im hoping all this is simply cause by inflammation..and not the C word...

Chances are its still a side effect of rads. Where was your cancer? Cheek, gum, tongue, base of tongue, tonsil? If your primary was in your mouth then there's a good chance you received the highest dose to your mouth. As you know it causes blisters etc. I discovered the areas where the rads beam went through took the longest to heal, and still flare up occasionally. I had one sore I was sure was a recurrence because it was so deep. It actually took cortisone to clear it up, and not your average dose. I also had another patch that would get irritated off and on.
Now the lymphadema - assuming you had a neck dissection - may take a while to subside. Once you've hit 6 months out and have had a clear scan and few clear check ups, seeing a lymphatic masseuse will help that. Numbness is very normal and semi permanent - I say this because I'm over two years out and still have numbness, it depends on what nerves where cut and how well they can regenerate
You could also have an infection so I would have it checked just to be on the safe side. Hugs!

My cancer was on the roof of my palate and they took out 55% of my roof and it came back beside my nose...the pain is in my cheek and now I have a very very stiff neck...had 24 lympnodes removed and my flap was stitched up against my cheek...had radiation done 3 months after my surgery...I have gone to see the doctor and he thinks I have an infection when he looked into my nose...I've been taking meds for 3 days now...yesterday was a great day...and today I woke up with pain again and swelling...i'm getting very frustrated ...