Discussions By Condition: I cannot get a diagnosis.

This is my last resort. Please help!

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Anonymous
  • October 15, 2008
  • 03:22 AM

Symtoms:
•began in may (5.5 months ago)
•pressure in front area of head, partially blocked nasal passages but no runny nose
•Pressure gradually spread to entire head, ears became plugged and have remained plugged since then. Thick/heavy feeling in head has remained.
•Swollen glands in neck, on both sides just above the Adams apple. Sometimes to the point where it feels like I’m being choked, although it has not yet compromised my breathing or swallowing. My throat does often feel/look enflamed but I have not had any ‘sore throats’ during this time. The severity of the swelling fluctuates and I have not been able to pinpoint any pattern.
•Sometimes produce white/yellow/greenish lumps in my mouth that smell and taste quite foul. Not sure if they’re coming down from my nasal passages or up from my throat. They are definitely solid matter but not hard. I spit them out if I can but often I end up swallowing them.
•In early July I had a very severe panic attack (as the emergency room doctor diagnosed it), something I have never experienced before and do not want to experience again. It came on suddenly, beginning in my extremities with a heavy numb feeling, then manifesting in my vision where I began seeing shadowy regions in the outer edges of my visual field, then my heart began beating extremely rapidly and I had great trouble breathing. Was quite sure I was going to die. The main incident lasted for about two hours but I ended up with high blood pressure for about a month and a half afterward. It should be noted that I am not the nervous sort; my friends would characterize me as extremely laid back. I have no history of mental illness.
•Since my panic attack I have had a lot of trouble with dizziness and vertigo.
•Trouble concentrating and focusing. I just don’t feel like my usual self.
•My blood pressure has returned to normal but the other symptoms still remain.
•This is all extremely debilitating, affects my day to day life greatly and I am starting to forget what it is like to feel healthy.

What I’ve done:
•I’ve seen MANY doctors about my issues. My GP several times, 4 walk in clinic doctors, an internist, an allergist, an ENT and an ER doctor. I also saw my optometrist who checked my optic nerve which looks fine and he didn’t see any signs of hypertension in my eyes. My dentist also didn’t notice any abnormalities such as TMJ. (that’s a total of 11)
•Treatments suggested to me were a Neti pot and a humidifier. Nasonex (which I haven’t been on for months now). I had two sinus x-rays/chest x-rays about 2 months apart which both turned up clear. Countless blood tests which all turned up normal, probably about 15 vials total. The blood tests checked for mono, thyroid problems, iron deficiency, Lyme disease, etc. All turned up normal. I did a 24 hour urine test which was normal. I had 2 electrocardiograms and an echocardiogram which both yielded normal results. I had a fiber optic scope inserted through my nose which didn’t show anything. I was on adalat and then switched to metropolol for my blood pressure and am no longer on either since my BP seems to have stabilized at a normal level. My allergy test showed that I’m allergic to dust and cats; I knew about cats already (I’m never exposed to them) and my mom is allergic to dust so we are very careful about eliminating dust in our house.
•What I would like/what I’ve wanted all along is a head/neck CT or MRI and I have mentioned this to several doctors but I’ve been shot down every time. They all tell me the same thing “it probably wouldn’t show us anything” and some also mention not wanting to expose me to the CT radiation. I have no further appointments scheduled, I feel as if I’ve exhausted all possible avenues. I’m totally on my own here so this is my last resort.

About me:
•I’m a 24 year old male. I am a full time university student and work part time as a porter at a hospital (so I could have been exposed to something unusual). I was very athletic up until this started affecting me, I don’t smoke, I don’t do drugs, and I drink casually. I NEED to get better VERY soon; this is no way to live.

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8 Replies:

  • Sounds horrible what you are going through. You mention that you’ve had two sinus x-rays. Have they ruled out infection in all the sinus cavities? I am mostly concerned about your frontal sinus? But also sphenoidal sinus. Have they ruled out mastoiditis? Have you yourself seen the x-rays? Has any doctor showed you the pictures and pointed out all the sinus cavities? Empty cavities are dark on an ordinary x-ray picture. Have you showed the hard things coming down your throat to any doctor? What did they say? So you have not been on any antibiotics since it all started? I agree that you need an MRI. I agree that a panic attack is horrible. I hope you soon find out what’s wrong.
    Felsen 510 Replies
    • October 16, 2008
    • 00:04 AM
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  • Thanks for your reply Felsen,"Have they ruled out infection in all the sinus cavities?"I had xrays done twice about a month apart. Both times the xray tech told me they would send the films to my doctor who would call me with results. Both times I was called back and told that the xrays were normal. Unfortunately I did not get to see them myself."Have they ruled out mastoiditis?"It was not mentioned specifically but I'm hoping one of the many doctors would have noticed this if I had it."Have you showed the hard things coming down your throat to any doctor? What did they say?"Because they are at the back of my throat I usually swallow them accidentally. The odd time I do spit one out I haven't bothered saving it. I'm thinking they're tonsilloliths perhaps? "So you have not been on any antibiotics since it all started?"No not yet unfortunately.Blaze,thanks for your post! I have done considerable research into Lyme since my issues began. Mainly because when I put my symptoms into a search engine the majority of results I get are Lyme related. The list of Lyme symptoms compared to mine are remarkably similar so I did bring this up with a doctor. He said there were no cases of Lyme in the area but agreed to have me tested anyway (which was negative). Now I'm aware of the reluctance of most doctors to acknowledge the prevalence of the disease and I'm aware of the false negative test issues but despite knowing this I'm unsure of how to proceed. I live in Canada and we have a public health care system, which is great if you have something run of the mill but I've noticed recently that's it's hard to get a good thorough exam from a doctor or get sent for more extensive diagnostics. It seems that every doctor I see is looking to get me out of their office as fast as possible and go through as many patients as possible. VERY few take ALL my symptoms into consideration. They'll focus in on one symptom and book me for an appointment with a specialist in that area. It is frustrating because the wait to see a specialist is usually a month minimum, and in the mean time I get to continue suffering. The last doctor I saw was the ENT and I have a hearing test booked for Monday at his office then a follow up with him the same day. Apparently this will check the negative pressure levels in my ears or some such thing. I'm going to try and be fairly insistent on having some more diagnostic imaging done as this ENT is my last appointment I have booked. After this my only option will be to go back to my GP or a walk in clinic and hassle them some more.I will keep everyone posted on here! Hopefully I can get diagnosed and shed some light on this mystery. In my poking around online I have come across many cases identical to mine but nobody seems to solve the problem (or at least doesn't post about it).Thanks for taking the time to have a look at my case and giving some advice. It's very much appreciated.
    Anonymous 42789 Replies
    • October 17, 2008
    • 01:42 PM
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  • I think that the most probable reason to your symptoms is a sinus infection. An ordinary x-ray should depict your maxillary, frontal and sphenoid sinuses if one of the pictures was taken during maximum opening of your mouth. But even if the examination was correct, the radiologist might have missed something. Also the mastoid cells are difficult to assess. If you have a sinus infection, it will easily spread to you ears through the connection from the throat. For me it is obvious that sinusitis must be ruled out first. All sinuses including the mastoid cells will be well depicted on an MRI. Especially if the cavities are filled with pus or liquid. If I were you I would insist on an MRI (MRI does not include x-rays) in order to properly ****s the whole area. You shouldn’t rule out Lyme but a sinusitis is more probable in your case. I don’t know where in Canada you live but in many parts the ticks can not be very common. In any case, I have feeling that you would benefit from a thorough treat of antibiotics. I wish you best of luck.
    Felsen 510 Replies
    • October 18, 2008
    • 02:30 PM
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  • hey I've been having ur symptoms for almost a month now. I've had mri, cat scan, blood tests.. nothing was wrong. I'm only 21 perfectly healthy (used to be ) and i think it all started after the end of this summer. I live in Canada too so i cud have been exposed to Lyme I don't know. Shouldn't the regular blood test that they do rule out lyme disease?? cuz i've had alot of them done!. I went on antibiotics for a bout a week and half it kinda reduced my symptoms. now I'm taking prednisone ( a steroid ) about 40 - 55 mg a day and i think it makes my symptoms vanish wen i stop or decrease the dosage i get dizzy again,, although the ENT said he didn't think i have an inner ear infection, I had to go beg one of the doctors in a walk in clinic to prescribe me prednisone. I still have an ENG exam this monday so hopefuly they'll find something because i'm sik of this and i've been off my co-op job for bout a month now so i'm basically wasting my time..
    Anonymous 42789 Replies
    • October 18, 2008
    • 07:05 PM
    • 0
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  • Hey Not Reg'd! I'm sorry to hear you're having the same difficulties as I am. There are many cases such as ours (from what I've encountered) so at least it's nice to know we are not alone. At least you're getting some form of treatment! That's a step further than I've gotten; I can't even get a proper diagnosis. I had my hearing test with the audiologist who said the pressure in my ears is normal and that I have 'super human hearing' (not much of a comfort). I saw the ENT afterward to go over the results and to make a long story short he said there was nothing he could do for me. No medication he could prescribe and refused to send me for an MRI because he felt it would not show anything. I asked if there could be some kind of infection and he said "no that would have been pretty obvious". So I'm back at square one here which is quite frustrating after all this time and running around to different doctors. I'm in Ottawa and there's a private MRI clinic across the river in Quebec but I still need a requisition from a doctor. So for now I'm just mulling over what to do next. Very frustrating when you feel like crap and you keep getting a clean bill of health!Anyways, sorry for the rant but I don't like to talk about it with my friends and family too much. Since, it has been 6 months now I think they're getting kind of tired of my complaining. Because I look otherwise healthy they just dismiss it. So this is kind of my outlet for rants for the time being :PMy symptoms haven't changed much. Just an increase in swelling in my throat (still don't have a sore throat though). I had a my second panic attack ever today, although I would say it was a 'mini' panic attack. I was driving on the highway so I had to pull over, luckily I can usually tell when I'm going to have one so I had enough time to park the car. Thought maybe that big one in July was a fluke because I haven't had another til today. Let us know if you get any answers 'not registered'. Hope you feel better soon!
    Anonymous 42789 Replies
    • October 24, 2008
    • 08:57 PM
    • 0
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  • I'm just curious why are you insistent upon an MRI or CT scan? We typically use these imaging studies based upon their ability to provide various levels of detail depending upon what we're attempting to confirm, but they are pointless when used to merely gain greater clarity where it serves no purpose. Plain radiographic films are actually the most ideal for determining whether an infection, or possibly a fluid level, exists within the frontal and ethmoid sinuses. There tends to be somewhat of a misconception that CT and MRI imaging respectively constitute something better regardless of the problem. If this were somehow true, we would have abandoned the plain radiographic imaging apparatus years ago. As for considering an internet forum the last resort, I must caution you never to search for a diagnosis on the internet. It represents an excellent source for support from people who have possibly experienced similar problems, but it is certainly not a portal for direction concerning your medical problems. I would also ask the question regarding your observation or sensation that the tissues in your throat are swollen. Is this based upon what you feel, observe or have been told by your physician? The small lumps you are expressing from time to time are indeed most likely tonsoliths and do not represent the presence of any other pathology. Is the discomfort you feel worse when you first wake up in the morning or is it worse at night before you go to bed? Your problem is not due to any type of infection and the extent of your diagnostic tests would support this fact. Do you feel that the panic thresholds are being brought on by your other symptoms? There are a number of disorders that can produce symptoms such as those you describe, but it's apparent that you've undergone a great deal of testing and evaluation which would have identified them. I also doubt that you've contracted anything from the hospital where you work. I suppose my point here is that you feel your symptoms indicate the presence of a disorder or disease that is not being located, but symptoms can arise in the absence of disease and it's important to realize this fact. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • October 25, 2008
    • 02:25 AM
    • 0
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  • Here is my two cents as I have gone the go around with many docs too. Have you tried a GI doctor? I had a lot of throat/sinus issues that related back to my stomach, and I didn't even have heartburn on my list of complaints. But they diagnoised me with GERD. I had the choking sensation in the front of my throat (I called it a strangling feeling) slight shortness of breath. I was tired a lot. My normally low PB was a little high too. I also had chronic sinus blockage, sinus infections, tonsil stones, tonsilitis, neck stiffness and pain, and anxiety. I am on a stomach mediction now- AcipHex and Nasonex for my sinus blockage. I did a round of antibiotics before the Aciphex - to be on the safe side. I am having my tonsils removed for the stones (nasty things!) and chronic tonsil issues. I also found probotics helpful for my immune system and stomach. It took a couple weeks but I drink one DanActive each day and I feel a lot better now for it. I have ended up having a B12 deficiency which I am taking B12 for now. Your anxiety might have been caused by the on going health issues. That is normal. I think if you can get to the bottom of the not feeling well then that will clear up if you are not normally prone to anxiety. My GI doc was very systematic in finding what was wrong with me. He said something that made me realize that you CAN have more than one thing with you at a time. One symptom might have nothing to do with the next therefor not make much sense when you add them all up. One thing I have noticed is doctors LOVE to give pills. If had done what all the doctors advised me before the GI doc I would be on like 20 different medications and none of them had a darn thing to do with my stomach.
    CANDERSON 18 Replies
    • October 25, 2008
    • 02:44 AM
    • 0
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  • i would insist on having a ct or a mri of the brain. my sister in law had similar symptomsand it was brain cancer of the nasalpharynx. green things couldbe polyps she had them also. insist on it even if you have to threaten your doctor with legal action if somethingis misdiagnosed. hope everyhing will be fine sister in law is doing well no matter what keep ****s involved. he healed herSymtoms:•began in may (5.5 months ago)•pressure in front area of head, partially blocked nasal passages but no runny nose•Pressure gradually spread to entire head, ears became plugged and have remained plugged since then. Thick/heavy feeling in head has remained.•Swollen glands in neck, on both sides just above the Adams apple. Sometimes to the point where it feels like I’m being choked, although it has not yet compromised my breathing or swallowing. My throat does often feel/look enflamed but I have not had any ‘sore throats’ during this time. The severity of the swelling fluctuates and I have not been able to pinpoint any pattern.•Sometimes produce white/yellow/greenish lumps in my mouth that smell and taste quite foul. Not sure if they’re coming down from my nasal passages or up from my throat. They are definitely solid matter but not hard. I spit them out if I can but often I end up swallowing them.•In early July I had a very severe panic attack (as the emergency room doctor diagnosed it), something I have never experienced before and do not want to experience again. It came on suddenly, beginning in my extremities with a heavy numb feeling, then manifesting in my vision where I began seeing shadowy regions in the outer edges of my visual field, then my heart began beating extremely rapidly and I had great trouble breathing. Was quite sure I was going to die. The main incident lasted for about two hours but I ended up with high blood pressure for about a month and a half afterward. It should be noted that I am not the nervous sort; my friends would characterize me as extremely laid back. I have no history of mental illness.•Since my panic attack I have had a lot of trouble with dizziness and vertigo.•Trouble concentrating and focusing. I just don’t feel like my usual self.•My blood pressure has returned to normal but the other symptoms still remain.•This is all extremely debilitating, affects my day to day life greatly and I am starting to forget what it is like to feel healthy. What I’ve done:•I’ve seen MANY doctors about my issues. My GP several times, 4 walk in clinic doctors, an internist, an allergist, an ENT and an ER doctor. I also saw my optometrist who checked my optic nerve which looks fine and he didn’t see any signs of hypertension in my eyes. My dentist also didn’t notice any abnormalities such as TMJ. (that’s a total of 11)•Treatments suggested to me were a Neti pot and a humidifier. Nasonex (which I haven’t been on for months now). I had two sinus x-rays/chest x-rays about 2 months apart which both turned up clear. Countless blood tests which all turned up normal, probably about 15 vials total. The blood tests checked for mono, thyroid problems, iron deficiency, Lyme disease, etc. All turned up normal. I did a 24 hour urine test which was normal. I had 2 electrocardiograms and an echocardiogram which both yielded normal results. I had a fiber optic scope inserted through my nose which didn’t show anything. I was on adalat and then switched to metropolol for my blood pressure and am no longer on either since my BP seems to have stabilized at a normal level. My allergy test showed that I’m allergic to dust and cats; I knew about cats already (I’m never exposed to them) and my mom is allergic to dust so we are very careful about eliminating dust in our house.•What I would like/what I’ve wanted all along is a head/neck CT or MRI and I have mentioned this to several doctors but I’ve been shot down every time. They all tell me the same thing “it probably wouldn’t show us anything” and some also mention not wanting to expose me to the CT radiation. I have no further appointments scheduled, I feel as if I’ve exhausted all possible avenues. I’m totally on my own here so this is my last resort.About me:•I’m a 24 year old male. I am a full time university student and work part time as a porter at a hospital (so I could have been exposed to something unusual). I was very athletic up until this started affecting me, I don’t smoke, I don’t do drugs, and I drink casually. I NEED to get better VERY soon; this is no way to live.
    Anonymous 42789 Replies
    • October 25, 2008
    • 02:54 AM
    • 0
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