Discussions By Condition: I cannot get a diagnosis.

Head, ear pressure, left facial tingling, body chills--No lab findings! Need DX !!

Posted In: I cannot get a diagnosis. 26 Replies
  • Posted By: malli52
  • January 29, 2009
  • 03:59 PM

For the past month I have had daily (and often multiple times a day) symptoms that are worsening:
1. Lightheaded feeling, usually when standing but not always; doesn't have to be with movement. Passes in 10-30 minutes. Frequent. One episode of vertigo.
2. Ear pressure, began 2 weeks ago. Usually left side but occasionally right. Comes and goes but becoming a constant in the left side.
3. Sinus pressure (no discharge)--Comes and goes for the past month. Affects vision (blurry) at times.
4. Nerve tingling on left side of face (cheek, mouth, tongue, neck)-3 episodes, last was within 24 hours.
5. Head pain on left side, lower back of head--several times in first week.
5. Episode of throat tightening, tongue thickening which passed after removal of a medical patch Rx. Some difficulty breathing (sense I had to force myself to exhale) for 2 days thereafter.
6. Cold chills in back, chest, arms-started last night. Fluctuates in severity. No fever. General sense of being ill.
I am a stable type 1 diabetic (21 years) who is 56 years old, female.
Tests taken have ruled out diabetes, hypoglycemia or hypertension as the cause.
I've had blood work, a CAT scan, and everything is normal, but I KNOW I am not.
I KNOW that I am sick and getting sicker and am frightened. I can tell my providers are baffled and just go for the easiest answer (mddle ear or allergy). I;ve never had either before. They can't understand the facial nerve problem.
I feel I am going to be allowed to get sicker and sicker without treatment until it is too late.
This is not psychosomatic!
Help, please!

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26 Replies:

  • I think I saw your posting before. Dd they check you for celiac disease?
    aquila 1263 Replies
    • January 29, 2009
    • 05:00 PM
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  • I think I saw your posting before. Dd they check you for celiac disease? I think I saw your posting before. Dd they check you for celiac disease? This is my first posting but it is interesting that someone else may have similar symptoms!!Re celiac disease, I don't believe I've been tested for it. I have never heard of it nor was this brought up by my physicians (I've seen 3 doctors so far---my primary, who is a family practice doctor, a nephrologist (with whom I happen to work) and an emergency room physician. Tell me more about it? I;ve been frustrated by the helplessness/rationalizations/disbelief of physicians I've seen so far. My primary MD told me my blood work was normal, and therefore my sx must be allergy though to what no one knows to what---(obviously a guess and doesn't explain the left sided nerve tingling in my face hich suggests Bell's Palsy but is episodic. ) She Rx'd Flonase (no help!) She is puzzled by the nerve tinglings.My MD humored me by referring to a neurologist and an ENT doctor, which doesn't happen for another 12 days! Yesterday I had a very bad episode of ear/sinus pain/lightheaded/general head tension and slight nausea (I had to be escorted out of a meeting because I looked sick and i felt faint. )he symptoms abated somewhat so I could function though the earaches persisted. I saw the nephrologist after this--he was also puzzled, but opined I must be having several different illness processes simultaneously (though I know they are connected. I can feel various areas in my head and neck firing off in the past month, sometimes together, sometimes alone). He ordered a calcium check but told me he didn't expect any findings.Since then I started getting chills in my back, chest, arms despite no fever.I wonder if something fungal may be the cause of my sx? If it is it wouldn't show up in lab work but could become very dangerous if untreated and allowed to spread. I've seen other immune compromised individuals go untreated despite sx of infection for weeks because of no findings, only to die of fungal infection while hospitalized waiting for results of fungal cultures. I am scared. I admit it.
    malli52 4 Replies
    • January 29, 2009
    • 05:37 PM
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  • I think I saw your posting before. Dd they check you for celiac disease? I haven't posted before.I don't think I have been tested for celiac disease. I don't know what that is.I am feeling quite ill now---chills, sweats, blocked ears. No fever.
    malli52 4 Replies
    • January 29, 2009
    • 08:30 PM
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  • Sorry to hear of your illness! Must have been hard to diagnose. i hope you are able to manage the symptoms and have a reasonable quality of life. I doubt I have a similar condition because I rarely if ever use a cell phone though who knows? My symptoms (episodic but frequent lightheadedness, sinus and ear pressure) seemed like classic sinus/inner ear problems, but the way I have been feeling generalized and unpredictably relocating discomfort in my head and neck and sometimes in my arms--feels more like a flu. Yet there is NO white cell increase or other signs of bacterial or viral infection. (As a type 1 diabetic I usually can detect an infection because it raises my blood glucose readings. That isn't happening either). It just keeps getting worse and the duration of 4 weeks concerns me a lot. Especially since I developed a feeling of "fever" in my body just yesterday and it continues without having a temperature, and seems to wax and wane in degree! Then feeling suddenly flush and hot while shopping in 63 degree weather---is bizarre. Also the nerve tingling in my face which happened once and went away about a week ago and recurred in limited form just yesterday. I can tell my MD is beginning to think me a hypochondriac though I've never been a complainer in the 15 years I've been her patient before....... Seems my symptoms don't fit any category. I worry much more because of my diabetes making me vulnerable and because the symptoms are clearly significant but undiagnosable and so far, untreated. Thank you again for your input. I wish (us both) well!
    malli52 4 Replies
    • January 29, 2009
    • 11:40 PM
    • 0
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  • Hi I've been having similar symptoms for the past 4 months. there are days where i feel perfectly normal. now i just feel extremely tired most of the time and a bit nauseous. i''ve had MRI, CAT scan, many blood works and they found nothing except for low platelet count and it keeps on dropping and low vitamin D levels ( i live in canada) so the doc is gonna refer me to a hematologist to see if there is something wrong, I'm only 21 and this is making my university life so much harder! I've also seen an ENT earlier when these symptoms started i've had the test where they run water thru ur ears.. they found nouthing!. the general doctors found a few ear infection which kept coming and going thru the 4 month period and some liquid in my left ear which comes and goes. I'm also going to see another ENT soon. try using the saline soultion in ur nose and when you drop it tilt your head so the solution goes to ur inner ear it does help me remove the fullness in my ear and it works better than steroidal nose spray for me. oh i've had this drooping eyelid on my left face for a while and some numbness on the left part of my head but it's not always there i feel lik im handicapped wen its there i dunno its weird, I'm just sick of not having a normal life i keep giving excuses to not to go out cuz i dun have a diagnosis and i do ever go out i come back early so exhausted and i can't drink like before cuz i already feel drunk as i am :( anyways let me know what happens with you.
    rmk_1987 20 Replies
    • January 30, 2009
    • 02:43 AM
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  • The tingling in your face is from the trigeminal nerve,not the facial nerve.I'm just not sure what's causing it.
    richard wayne2b 1232 Replies
    • January 30, 2009
    • 02:12 PM
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  • This info on celiac is from the US Government: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm
    aquila 1263 Replies
    • January 30, 2009
    • 05:17 PM
    • 0
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  • Hello,My boyfriend is going through almost exactly the same thing you are going through. It was strange because when I was first reading what you wrote I thought that maybe he had written it, but no. He's been dealing with his symptoms for almost 4 MONTHS!He went to an ENT who sent him to the Neurologist who sent him to another ENT who suggested he see a neurologist! The blood tests, MIR, everything has come back normal! It's so frustrating and the dr.'s dont seem to really care, they just have the throw-up-their-hands kind of mentality- they just dont want to deal with it! He's got all the same symptoms as you- tingling on the face, numbness on the face, pressure in the head, ear pressure, body chills, etc. He took a fungal test which showed some yeast which could be a sign for a fungal infection, but he's also been on antibiotics for a few weeks and that's known to build up yeast too. GAH! It's so frustrating! Have you found out anything new?? He's now afraid it's a brain abscess. I dont know. He needs someone to help him, this is ridiculous!Thanks!
    Anonymous 42789 Replies
    • January 30, 2009
    • 09:55 PM
    • 0
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  • i had the same symptoms and had a labrinthine fistula (aka perilymph fistula), which is a tear in the membrane near the facial nerve...go to dizzytimes.com and check symptoms of members there with same issue, best wishes
    Anonymous 42789 Replies
    • February 7, 2009
    • 08:55 PM
    • 0
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  • Wow how long did it take u to be diagnosed and who and what tests did u take that helped with the diagnosis ?
    rmk_1987 20 Replies
    • February 8, 2009
    • 02:18 AM
    • 0
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  • I too have some of these symptoms!!!!! Some of them i have had on and off for 3 and half years starting after my first pregnancy and no out of control after having my second child. I have these spells of head and ear pressure, tightening of front of neck, numbness in mouth/tongue and legs/feet. Burning feet and legs. Extreme digestive issues.... list could go on. Also get a weird taste in mouth and internal shaking. Have had Mri,s cat scans, blood work, lyme testing. The only thing they can find is lesions on my spleen.
    daisykf 21 Replies
    • February 8, 2009
    • 01:43 PM
    • 0
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  • It can't be so hard to diagnose neurological symptoms but it seems it is! Since my first postI things have worsened. the left ear pressure is there always now. Constant neurological sx of one sort or another, including a couple of bouts of headpounding pressure in the back left side of my skull that went away in a few minutes, blurry vision in the left eye (clears up in around 10 minutes,) Tingling in the face is nearly constant but seems to flare up in various locations (gums, lip, cheek, near the ears, etc.), constant tingling below the waist (in the back, above the buttocks),weakness or numbness in fingers and toes (various and remits), electric feeling jabs in my chest, and on and on. I still get body chills without a fever. No infection. Normal CT scan. MRI next week. Doctor had an attitude when i suggested could this be MS! She said no way, but she has no idea what it is. Maybe migraines, she said. How does that cause tingling in the hip/back area? And CT scan was normal. But I am not sure I believe that. MY general MD gave me nortriptaline (sp?) and clonopin to relieve the sx. Next week I have an MRI of the brain. MY MD suggested this could be migraines even tho i rarely have a headache. And what about the tingling butt? Can a migraine cause that? Yeah, so maybe I am having 2 problems that started within 2 weeks of one another. Sure, like I believe that. Can this be MS? I can't believe this is anything other than MS but the docs don't agree. They just don't know wre Saw a neurologist who i (always less than 10 minutes before it goes away by itself) my MD suggested I am having migraines (which don't always present as headaches at all...).I have suddenly developed tingling below the waist on the backside (nearly my entire behind!) which has become a constant for the past 10 days. Ear pressure and facial tingling (moves around from cheek to gums to lips to other cheek and so on and so on..) continues even tho my MD put me on nortryptaline (SP?).Yesterday had a bad bout of the chills without any fever.Next week is the MRI.I am astounded by how many people suffer with similar sx and somehow manage to get through life. This is debilitating. :(
    malli52 4 Replies
    • February 11, 2009
    • 08:10 PM
    • 0
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  • Please have one of your Dr. (my ENT did mine) do an MRI of the brain with contrast. I had the majority of the symptoms you describe and I was finally diagnosed with Chiari Malformation, which is the cerebellum of the brain herniating down out of the skull and pressing on the spinal column. Surgery is the only way to repair this before major nerve damage occurs. I had problems from 2000 until 2007 before they found my problem. The neurosurgeon said I would have been completely paralyzed within 5 years if it had not been caught!
    Anonymous 42789 Replies
    • February 12, 2009
    • 09:35 PM
    • 0
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  • your sympotoms are of some relation to mine exept the body chills and I have more vertigo, do you use an ab belt of some sort?
    Anonymous 42789 Replies Flag this Response
  • I just returned from the Dr with the same symptoms. Some minor sinus pressure, and most of all bizarre tingling...up the left side of my face. My Dr believes I have a severe sinus infection that has caused pressure on my v3 and v2 facial nerves. I'm on 2000mg of Amox for 10 days. Hopefully that will solve this. I've never experienced something like this before. The tingling comes and go. Good Luck.
    Anonymous 42789 Replies Flag this Response
  • For the past month I have had daily (and often multiple times a day) symptoms that are worsening:1. Lightheaded feeling, usually when standing but not always; doesn't have to be with movement. Passes in 10-30 minutes. Frequent. One episode of vertigo. 2. Ear pressure, began 2 weeks ago. Usually left side but occasionally right. Comes and goes but becoming a constant in the left side.3. Sinus pressure (no discharge)--Comes and goes for the past month. Affects vision (blurry) at times. 4. Nerve tingling on left side of face (cheek, mouth, tongue, neck)-3 episodes, last was within 24 hours.5. Head pain on left side, lower back of head--several times in first week. 5. Episode of throat tightening, tongue thickening which passed after removal of a medical patch Rx. Some difficulty breathing (sense I had to force myself to exhale) for 2 days thereafter. 6. Cold chills in back, chest, arms-started last night. Fluctuates in severity. No fever. General sense of being ill. I am a stable type 1 diabetic (21 years) who is 56 years old, female. Tests taken have ruled out diabetes, hypoglycemia or hypertension as the cause. I've had blood work, a CAT scan, and everything is normal, but I KNOW I am not. I KNOW that I am sick and getting sicker and am frightened. I can tell my providers are baffled and just go for the easiest answer (mddle ear or allergy). I;ve never had either before. They can't understand the facial nerve problem. I feel I am going to be allowed to get sicker and sicker without treatment until it is too late.This is not psychosomatic!Help, please!I have had similar experiences ever since I was infected and hospitalized with Lyme Disease which progressed into Lyme menengitus. Prodominently all of my issues are on the left side and although the disease itself is conrtoversial, it probably would not hurt to be tested for it using the western Blot test and just skip the ELISA test as it's specificity is only in the 50 % or less range. Additionally they only test for the 6 most common strains of the infection, even though there are hundreds of variations of the infection. The western Blot is not much better but will at the very least identify titers that are positive. Lyme can progress into a Neurological disorder if not treated. You could get a spinal tap and look for high protien levels. This will establish that you have some type of an ongoing infection. If it is Lyme, all that I can say is good luck, you will soon find that you are on your own. Most physicians believe it is easily treatable and has a 100% cure rate. Until they get it!
    Anonymous 42789 Replies Flag this Response
  • Sounds like you could have some kind of Autonomic Dysfunction. The Autonomic nervous system is damaged. Alot of drs dont even know about it. I suggest you bring it up to youre neurologist. Look it up on google and look at the symptoms.
    ecko23 51 Replies Flag this Response
  • Has the person who originally posted this thread found what was wrong with them? I have some of the exact same symptoms and my doctors (mainly a neurologist) have been able to figure out what's wrong:The two main problems have been:Shortness of breath (not all of the time, but it's been on and off for about two years)Head pressure in the left side of my head (this has been everyday, but with varying degrees of severity. On my most severe days, I can barely focus enough to read my emails.)I also have tingling sensations in my face, arms and legs. Chills that shoot down my entire body. I've had long term muscle (and weight loss). This has continued despite working out on a very frequent basis.I am constipated most of the time so I take a lot of fiber. However, sometimes, I have diarrhea for know apparent reason. The constipation, though, could be from the water pill I'm prescribed for high blood pressure. I'm frequently fatigued. This is atypical of me. Usually I have a lot of energy and I have a high sense of drive and purpose. An MRI I had a few weeks ago showed nothing, completely clean. Blood tests showed a slightly low Vitamin B12 (which doesn't make much sense because I eat white meat pretty much every day) and slightly elevated muscle enzyme levels - I have know idea what that can mean but my neurologist thinks it's nothing.Everyone think it's stress but my stress level has been lower recently than it was two to three years ago. Work has been good and my relationship has been strong with the exception of this continuing health issue.Any help is much appreciated.
    MDClarkson 1 Replies Flag this Response
  • For the past month I have had daily (and often multiple times a day) symptoms that are worsening:1. Lightheaded feeling, usually when standing but not always; doesn't have to be with movement. Passes in 10-30 minutes. Frequent. One episode of vertigo. 2. Ear pressure, began 2 weeks ago. Usually left side but occasionally right. Comes and goes but becoming a constant in the left side.3. Sinus pressure (no discharge)--Comes and goes for the past month. Affects vision (blurry) at times. 4. Nerve tingling on left side of face (cheek, mouth, tongue, neck)-3 episodes, last was within 24 hours.5. Head pain on left side, lower back of head--several times in first week. 5. Episode of throat tightening, tongue thickening which passed after removal of a medical patch Rx. Some difficulty breathing (sense I had to force myself to exhale) for 2 days thereafter. 6. Cold chills in back, chest, arms-started last night. Fluctuates in severity. No fever. General sense of being ill. I am a stable type 1 diabetic (21 years) who is 56 years old, female. Tests taken have ruled out diabetes, hypoglycemia or hypertension as the cause. I've had blood work, a CAT scan, and everything is normal, but I KNOW I am not. I KNOW that I am sick and getting sicker and am frightened. I can tell my providers are baffled and just go for the easiest answer (mddle ear or allergy). I;ve never had either before. They can't understand the facial nerve problem. I feel I am going to be allowed to get sicker and sicker without treatment until it is too late.This is not psychosomatic!Help, please!DO you drink sodas laced with aspartame?You head issues and blurry vision as well as the flu symptoms are the same symptoms that are being described in many testimonies on line about aspartame. Check on youtube - search aspartame and FDA and you will see many videos and the symptoms of the consumers, and the reason this sweetener is on the market. I must say that there are other poisons on the market today to be careful to avoid. ( sucralose /Splenda, and Gardasil) Google them and see what else to avoid. Hope you feel better asap. ( Sucralose causes brain fog as well. Research. )
    founddog 188 Replies Flag this Response
  • ok this is all so strange because i have been feelin these same symptoms maybe added a few. im only 21 and for a while now i been having this pressure in my left ear and cheek and even my neck and up to my temple. sometimes i get a pain in my chest and my left side of my neck and shoulder have been tightening up. i have been to the er and they did quick blood work and siad nothing is wrong with me also i kinda feel like there is something in my neck like my glands are very swollen . when i try to hock a lugi i get like suds its strang im guessin thats yeast kinda like fiz from a beer, i also been burping alot but i cant get the feeling of having a burp stuck in my throat out of there. i read something someone said about fungus. i was exposed to a fungus in a house they all called it black mold but we was in there for a while i dont know if maybe i could have got that in my lungs or what, also i have this foot fungus i have had for a while whick is also in my butt crack , i have blood work going throught the lab right now. but i feel horrible i dont know if i got much time
    Anonymous 42789 Replies Flag this Response
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