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Avatar universal

Can anyone help with very bizarre symptoms PLEASE!

I have been having some very weird and worrying symptoms.  I have been getting a very bad burning and swollen feeling in the left side of my head down into my cheek.  It's not there when i wake up..it comes during the day and cold air especially really aggravates it...it almost throbs it gets so sore and burns so badly. Does this sound familiar to anyone or any suggestions to what it could be...i'm very worried it's something serious like brain tumor or MS or such.  I've had a numb feeling for months in the same area but not it's a burning..almost like my face and head are on fire..only left sided.  If anyone can help i would really appreciate it....could it be an infection in my face and skull?
19 Responses
Avatar universal
Hi,

I am certainly not an expert but I am dealing with this as well. It could be a number of things from infection, Lyme Disease, MS, etc. and you should definitely get it checked out.

I have also been having neurological symptoms such as burning, numbness, and tingling in different areas of my body. It's been really scary but the fear of the unknown is the worst, don't you think? I have autoimmune hypothyroid but my docs don't think this is related and now I'm being worked up for infectious disease and MS. I just had an MRI that showed possible MS like changes and now I have to have a spinal tap, which is the next step in MS diagnosis. It's no fun at all but I want to know what's going on with my body.

Take a deep breath and make an appointment to see your doctor, you will feel better when you know what's going on. Hang in there!
Avatar universal
I have been going to my doctor for 9 months. She seems to think it's nothing to worry about..maybe a pinched nerve from stress or such but i'm starting to get really scared it's a tumor or something serious. It's only in my head and face, no other body syptoms at all. So frustrating because it's like they don't believe me. They're not the ones living with it everyday!
Avatar universal
I'm just wondering if this was some sort of skull/facial infection would the syptoms come and go like it does or would they always be there? I'm just so frustrated!  Doctor keeps telling me it's stress, i don't feel stressed out! Also  would a tumor show on a CT scan because i did have one done and everything was normal!!
Avatar universal
did they use contrase in your ct? i had one too, but they did not use contrase, i was later informed that if they do not use contrast that small things are easily missed. Mine came out fine too, i had very different symptoms than you. sorry i can't be much help.
Avatar universal
Could be you have an infection that has settled into the lymph nodes in your cheek, like an abscess from a tooth or infection in your ear.  Feel of the lymphs in your cheek, and also in the neck between the throat and the corner of the jaw... if either area is tender to the touch, that's an indicator you have an infection in your head somewhere.  A dentist can determine if it's a tooth. Your regular doc can do some bloodwork to look for infection, bacteria, and so on.  And an ear nose throat ENT specialist can take a look at you, he has seen so many oddball things in people, that he might know right away the cause of your symptoms.

Could also be you have a nerve problem in your neck or head, but the scan you had should have demonstrated that.  You could have your pictures and report sent to a neurologist's office, and have him take a look for anything abnormal with your nerves, and he can do some simple office examinations to see how you're doing neurologically on appearance.  He might spot something wrong that the other docs missed.
Avatar universal
No they didn't use contrast..just a regular CT scan..i'm having another one done next week by the ENT..not sure if it'll use it or not...so did the CT scan miss something for you? I'm just worried..the doctor is so sure that the CT scan would have showed something and that's why she's putting it off to stress....she did book me with a neuro though for next week also.
Avatar universal
Cheeks nor glands in neck are tender to touch...i do have another CT scan, dental xrays and neuro appt next week...i'm just tired of dealing with this...feels like the side of my head is swollen even though it's not visably so. Doctor did blood work and i guess it didn't show infection...she hasn't contacted me. I don't think a CT scan will show the nerves will it? At least that was my understanding...maybe an MRI will but there's a 8 or 9 month wait to get one of those around here...already been to an ENT..he used some tube to look up my nose and said it's not a sinus infection but is sending me for a CT scan anyway.  My worse fear is that's it's a brain tumor..my mother and grandmother both died from one but the doctor since since they both had it elsewhere first and it moved to their head it wouldn't be hereditary...i really hope not...my little girl is only a year old and she needs her mom..that's what's the hardest about all of this.  Someone told me antibiodics can cause nerve damage..anyone else hear this? I was on quite a few different ones when i had the baby..symptoms popped up four months later.
Avatar universal
Trust your gut instincts on getting to the bottom of this, they are rarely wrong. If you feel that you need further testing and don't feel heard you have to keep pushing. Is it possible to get a different primary doctor? You definitely need a second opinion. It's good you have those appointments lined up and you should definitely see the neuro. Why in the world would it take 8 months to get an MRI?! Wow. I would definitely push for the MRI, at least get on the list now. It shows way more than a CT and can detect very small things.
Like I said before, the fear of the unknown is the worst for me. Try not to let the fear take over because it will if you let it (I know!). I've never heard that about the antibiotics before. Take care and hope you get some answers.
Avatar universal
Find the post below yours, right now it's on page 2, from dude222, he's got a numbness in his face similar to yours, maybe you guys can exchange notes.  And we all want to hear how your various specialist tests go.  By the way, the CAT scan does indeed show nerves and blood vessels, but an MRI shows them in more detail.  A CAT scan can be improved, however, by injecting a dye to give helpful contrast in the pictures.  I assume your ENT checked for an earache...
Avatar universal
yeah he checked my ears and nose...very frustrating....it's weird how cold aggravates it...i'm seriously frustrated....sometimes i wonder how doctors become doctors...anyway i'll update after all the appointments
Avatar universal
I had my neurologist appointment yesderday...he listened to my symptoms and also did the test he normally does and doesn't think it's anything to worry about. He says that most likely it was a virus i had that attacked the nerve that carries sensation to my face and up into my temple area.  I have my CT scan today but of course i have a bad head cold so i'm not sure if they can distinguise a head cold from sinus infection or not...probably pointless of me for even go.  Still feel like i'm getting no where with this. The neuro said that if it was anything serious it would have been much worse by now since it's been nine months...easy for him to say....meanwhile i guess i just have to live with it since noone seems to want to help
Avatar universal
You had a dental visit scheduled this week, too, I think you said.  Could be a goofed-up tooth, so wondering how that went.  In the same vein, I wonder if a nerve got trapped where your jaw attaches to the skull, don't know if nerves go thru there, but it's called a Tempero Mandibular Joint problem or TMJ, where the jaw doesn't fit into its socket like it should.  The dentist should know about all that.  Since it doesn't feel numb when you first wake up, that might be because you're not moving your jaw.  As soon as you eat or talk, it might fire up, if it's that particular joint problem.

Back on the antibiotic idea, where you said you took a bunch when you had your baby, and four months later the symptoms appeared... you said you heard they might cause this kind of problem.  If so, perhaps there is an antedote type drug or treatment that will counteract that side effect.  You could do some research online and find out more on what happens to people who get a reaction to the types of antibiotics that do this and what is done for it.

Also, maybe you could tell us if it is painful, how bad is the discomfort, in what ways is this causing an upset in your life, can you live with it, that sort of thing.  I have a friend whose foot is permanently numb from a circulatory problem, and she just has become accustomed to living that way, so could be eventually you can just go on as usual and try to forget it.  But I know, you want to know why, just in case it's serious, to make sure it doesn't progress.  Since you have family members who have had tumors in the past, I can see why you think about that, but with all the scans, I think it would have showed up.  Maybe scheduling the MRI would indeed be a sort of final answer to that particular question.
Avatar universal
yeah except they won't schedule me and MRI..unless things get much worse. As for pain it's livable pain but i just miss feeling healthy! one side of my head and face just always feels different and i HATE that!  And living with it could be possible as long as i knew i wasn't living with something that in a few months, years will kill me so YES i HAVE to know what i'm living with! I don't like guesses! I have a CT scan today and a dentist appointment on Tuesday..i think he's doing a  whole jaw and mouth xray. By next week i'll be lighting up from so much radiation..if there's nothing there now there will be.  Anyway i'm just really frustrated..nobody seems to be worried about this but me...sometimes i think i should have been a doctor because i'd never let someone just "live" with something..i'd do whatever was in my power to find out what it is..it has to be the most horrible thing..having something wrong..not feeling healthy ...and not knowing why.  I'm just scared there's some infection lurking in there somewhere that'll eventually move to my brain...or that my worst fear will come true (tumor) ...as for him saying it's a virus well i'd like proof of that..not just a guess!
Avatar universal
Went to get the CT scan results today and the ENT tells me that i do have mild sinus disease but he's not worried about it...wouldn't be causing me all of these symptoms. WELL something is causing them! He said i can have surgery but he wouldn't recommend it....of course i don't want surgery if i don't need it.  I feel like i'm chasing my tail around in circles and these doctors can't make up their mind.  I'm getting beyong frustrated and starting to think i might just have to live with the pain. Pretty stupid how one day you can be healthy and the next your world falls apart! Anyway i'm just really frustrated and upset right now. Seeing my doctor this afternoon and going to see what prescription the neuro suggested i guess. If that doesn't work i have no idea where to do from here!
Avatar universal
Hang in, the dental appointment may reveal a clue as to what the cause is for your symptoms.  If not, I hope the prescription for sinus infection will help you feel better.  I know exactly how you feel, when your health goes, it can be unbelievable and hard to deal with.  Took me years to accept all the stuff I got, I had to be convinced of the final diagnosis, and even then, it took some more doc visits for me to fully understand what had happened to me.  But I'm not going to get better... in your case, I still think the jury is still out on that.  Let us know how the dental visit goes and how the sinus thing goes.
Avatar universal
that's just it..he didn't give me any prescription for the sinus disease...it's not an infection i guess or else i'm assuming he would have..must just be inflammation..i don't know...he didn't explain in normal people terms. The prescription is from the neuro...wants to see if it's a nerve either damaged or inflammed...and yeah it's getting very hard to deal with. Dentist appointment tonight but i doubt that'll shed any light..my teeth aren't sore at all...i made it more for just me, grasping at straws!
Avatar universal
dentist gave me the ok..everything looks good..jaw, teeth so it's not dental related..at least that's something i guess.
Avatar universal
Ye gads.  I'd be turning inside out at this point, were I you.  It doesn't sound like the docs are following up with you in any particular organized manner AT ALL.  I am assuming you got a general doc who is the gatekeeper for all these specialist visits you've been having, someone who has all the paperwork and is prepared to handle your situation once everyone has had a look at you.

Hon, all I can do now is suggest a couple things that might help you in the interim.  One, get you a plain saline nasal spray, with nothing else in it, to squirt in your nose three times a day.  It will soothe your sinuses, break up any wierd stuff that might be stuck in there, help get any swelling down.  The other idea is to "work on" your painful and numbed facial areas by gently rubbing in small circular motions from top to bottom, and when you get to the jawline, press a little harder there whilst gently moving your jaw around carefully, then smooth out from your face down into your neck, down to the shoulder as you swallow, then drink some water.  Also, in the evenings, put a cold pack on that side of your face for about five minutes, might reduce the burning sensation.

In addition, eat the B vitamins, like whole grains, which helps the nerves, and you could eat seafood twice a week, which has the Omega 3s in it, also good for nerves.  And what's good for the mucous membranes is orange juice, so drink a small glass daily.  Stay well hydrated, it will help break up any clog in your nose.  

I think you should set up an appointment to go back to your regular doc or go back to the neuro, and when you see the doc, ask them to refer you to perhaps an ear nose throat ENT doc, if you haven't already.  You might also suggest the doc at least give you some medicine for the burning sensation, which is obviously very uncomfortable, else you would not have pursued this the way you have.  If they won't, you could get a "burn salve" from the drugstore and apply it on there every now and then, see does it give you relief, try to find some that won't bother your eyes too much if it gets in there.

I'm sorry I don't know what is wrong with you.  I'm afraid I've reached the end of what I can offer you in the way of a clue as to what's wrong or any solutions to your discomfort.  In order to get some more responses from others in this forum, you could start a brand new post, title it with precise words that will draw folks who are familiar with your brand of symptoms.  I wish you the best, and sorry for your health issues, and I truly hope you find the answer as soon as you can.
Avatar universal
thanks for all your help and advice..it was really appreciated...i have a feeling it's all stemming from my sinuses..even though he's just saying mild to moderate sinus disease.  He did say he's do surgery but wants me to follow the neuro's idea for a prescription first. I'm just wondering if a longer course of antibiodics would be the way to go. Anyway thanks again for listening (or reading i guess is hould say) *L*

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