Discussions By Condition: I cannot get a diagnosis.

i feel so fustrated i could scream

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: MeganElizabeth
  • March 18, 2009
  • 00:59 AM

My names Megan, i'm 18 years old and i am so sick and tired of being passed around from doctor to doctor, going to hospital to hospital, seeing one specialist after another and no direct cause/diagnosis

So far, i had colitis (ulcerous), i ended up with really bad keratitis in both
eyes near the end of summer and am still having problems, i had severe sinusitisbut had sinus surgery in June 2008 for it, i have thyroid problems and a nodule on my thyroid

Ok this is one of the worst- i'm loosing my teeth. they're literally decaying, mainly from the inside out. I've tried really hard to make it stop and 2 dentists i've seen at the university of MD dental school have done everything they can to stop it, but nothings working. So far, i've had to have 2 back teeth pulled out and were seriously infected, while the others are chipping off if i eat and forget to be careful, ect. I don't have a choice but to eventually get teeth implants.

other symptoms-
. slight hair loss/ thinning of hair
. eye pupils are continously dilated no matter how light/ dark it is
. random joint swelling/ redness ( mostly in fingers, toes and feet )
. excessive sweating ( on/off sort of randomly )
. numbness in hands and mostly fingertips
. every week i can see another vein appear from under my skin
. occasional periods of insomnia
. constant low grade fever ( usually around 99.5 )
. sudden paleness ( i'm pretty pale anyway, but people have even seen me suddenly go really pale )
. there's been a few days at-a-time with really bad dark circles around my eyes, almost looks like bruising
. noticably worsening of motor skills/ balance


I've been to nearly EVERY specialist doctor there is. I even went to a cardiologist, and was told my heart beat is that of an infant's, but they found no actual heart problems. The cardiologist explained that when something 'bad' is going on in the body, the heart has to work harder- which is what he thinks is going on in my case. It was September when i saw him and my heart rate is getting faster, i can even feel my heart palpitate in unstressful or otherwise unexciting times.

Doctors have tested me for:
- Lupus
- Sjorgens syndrome
- Crohns disease
- Lyme disease ( tested only once )

all have come back negative. i had different ways to test for these diseases done, all negative.


I've pretty much missed my entire senior year because i'm sick. i feel so incredibly fustrated i scream.

if any one can help me or anything else, my email is punkygirl_28@yahoo.com

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13 Replies:

  • im so sorry you feel how you feel, my dear get your thyroid checked for hyperthyroidism,my cousin has it and she was in and out the doctors trying to figure out whats wrong,it took 6 months for my cousin to be diagnosed, your symthoms sound like what my cousin has, but you want to double check with the doctor but i thought i would give you an suggeston. Good luck my dear
    Anonymous 42789 Replies Flag this Response
  • im so sorry you feel how you feel, my dear get your thyroid checked for hyperthyroidism,my cousin has it and she was in and out the doctors trying to figure out whats wrong,it took 6 months for my cousin to be diagnosed, your symthoms sound like what my cousin has, but you want to double check with the doctor but i thought i would give you an suggeston. Good luck my dearMy daughter died after failure to diagnose Hashimoto's (chronic lymphocytic thyroiditis) and I suggest you have this ruled out with several tests before any severe mental/emotional symptoms occur.
    Anonymous 42789 Replies Flag this Response
  • im so sorry you feel how you feel, my dear get your thyroid checked for hyperthyroidism,my cousin has it and she was in and out the doctors trying to figure out whats wrong,it took 6 months for my cousin to be diagnosed, your symthoms sound like what my cousin has, but you want to double check with the doctor but i thought i would give you an suggeston. Good luck my dear Thank you for posting a reply to my message :) i've been checked with hyperthyroidism and other thyroid diseases and i did have a problem with my thyroid for a while but for about 3 years now i've been on medication to get everything back in balance. I end up havin blood work ALOT lol and they always make sure everythings still level and for a year now the blood tests for my throid came out good. Thank you though! i really appreciate it
    MeganElizabeth 4 Replies Flag this Response
  • For thyroid, always be sure to get a free T3 and T4 done. My TSH is always in the "normal range" but I have problems when my T3 and T4 are off. Also, until you can get a confirmed diagnosis, I know of a few natural remedies that may help ease some of the symptoms. MIND YOU, I AM NOT A DOCOR OF ANY KIND. My family has suffered considerably and I've learned a few tips and tricks along the way of trying to find out what's wrong. Magneisum is used to balance calcium levels in the body (might help the teeth), treat insomnia, slow down electrical activity, ease anxiety and depression, and calm the heart. I use natural powdered magnesium. Also, hawthorene berries are excellant heart protectors. We use that when we cant shake the papatations and tachycardia. Both of these should be available in the health food store. On another note, I'm glad to hear that you are not ignoring your health issues. My sister just turned 18 and is also sick of being sick, and she has the attitude that if she pretends she's well and acts like a normal 18 year old her problems will diappear. It's hard to watch her not take care of herself. I hope you find answers soon.
    d8agrl 4 Replies Flag this Response
  • Thank you so much for replying to my post My gum line is receding too, and thankfully after seeing my usual dentist when this all began he sent me straight to the University of Maryland Dental School, where they pretty much assumed the decay and problems with my teeth was due to eating too much candy or I wasn’t brush my teeth (which is not the case) They did an x-Ray and found bad infections in the roots of my back teeth and they changed their whole attitude about it. If I hadn’t been referred there, my teeth would probably not have lasted nearly this long. **The doctors and dentists at the University of Maryland Dental School that helped me were astounding- they understand everything and continue to help in every way they can- I have a lot of respect for them. Dr. Virts especially made an impact on me and my mom; he went out of his way to do whatever he could to get us where we are now- getting the best possible help that we can right now. I’ve never met such an amazing doctor or dentist in my life.** It kinda made me shiver when I read about how you tried to floss and it just made it worse. When I’d attempt to brush my teeth or floss, even when the dentists would try, parts of a tooth would chip off in little pieces. It’s almost horrifying in a way; you're try to save them from chipping or whatever but instead the attempts just make it worse. Thanks for mentioning all this information you’ve posted, especially about lymes disease. My mom is becoming increasingly irritated with doctors because she keeps telling them to run more tests for Lymes disease and they don’t because it’s extremely hard to test for or something. (we’ve heard a lot of stories, especially of kids, whose doctors ran blood tests for it but came up negative so the child went untreated, ect.) Hopfully we won't snap one of these days because doctors are so hard headed about testing for it lol Also, thank you for the article piece written by Robert O. Becker M.DIt was fascinating and some what scary at the same time when you realize what the whole article is really talking about. I imagine the majority of the population doesn’t even think about the effects of magnetic fields (let alone magnetic fields at all) and how they can potentially harm the brain and it’s functions- especially depressing the immune system. Thank you so much! If you possibly come across any more information, let me know!
    MeganElizabeth 4 Replies Flag this Response
  • Megan, I don't think you should dismiss the thyroid yet despite having had tests done. Your tooth decay problems could be related. I've read that thyroid disease can do all kinds of things to calcium levels and bones & teeth. Also, some thyroid tests can indicate normal ranges when things are not normal at all. Have you had thyroid antibody tests done or just hormone levels? Maybe you should see a specialist in endocrinology who can order a more thorough range of tests, as well as be more knowledgeable about how to interpret the levels. Most general practitioners, I have discovered through personal tragedy, do not have a clue about thyroid problems. You can read my post under the "misdiagnosis story" category. Take care.
    Anonymous 42789 Replies Flag this Response
  • My daughter died after failure to diagnose Hashimoto's (chronic lymphocytic thyroiditis) and I suggest you have this ruled out with several tests before any severe mental/emotional symptoms occur. thank you for posting a reply but what do you mean before 'any severe mental/emotional symptoms occur'? could you explain more about what happened to your daughter?
    MeganElizabeth 4 Replies Flag this Response
  • thank you for posting a reply but what do you mean before 'any severe mental/emotional symptoms occur'? could you explain more about what happened to your daughter?I wrote her story here. She had chronic lympocytic thyroiditis but no one figured that out but the coroner. She was I'm sure one the most severe cases ever because she became depressed, delusional, and psychotic as it progressed over a few months. She had severe bouts of memory loss also. She decided that she probably had multiple personality disrder because she was losing pieces of her memory. In less severe cases, Hashimoto's can cause depression, anxiety, fatigue, weight changes, and many other sort of vague things.
    Anonymous 42789 Replies Flag this Response
  • Lyme is often misdiagnosed, even after a blood test. But all your symptoms point in that direction.Have you taken specific meds for Lyme yet? If not, why not ask your doctor to get you on them? You really have nothing to lose...
    NeverGiveUpBoy 26 Replies Flag this Response
  • thank you for posting a reply I just found this post while I am searching for answers for myself... I hope you are better, but if not, please also get somthing called " Pituitary gland tumor"checked. I came across these when I was diagonised with severe Hyperthyroidism...Almost all of your symptons relate to pituitary gland tumor too...
    Anonymous 42789 Replies Flag this Response
  • thank you for posting a reply chrystalc, i have not gotten better though, unfortunately ive gotten worse.:( i found out i have nerve damage in my legs.However I had surgery in August 09 and they removed 19 teeth, it took 7 hours. i was horrified but let me tell you i am so glad i had that surgery- i have dentures (in a way) so i can talk without trying to hide my face because of being embarrassed AND i can finally eat without being in horrible pain. i had went from 123 pounds to 108 pounds in 3 or so months because of the pain. what other symptoms are there for a pituitary gland tumor?
    MeganElizabeth 4 Replies Flag this Response
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  • hi! how are you now? hope you're doing okay.i dont know if these would help, but i just write them anyway. Usually a pituitary gland tumor will first affect your eyesight or your eye movement, since the nerves for the eyes are closer to the pituitary gland. it also comes with headache if the tumor is big enough (mass effect). for hyperthyroidism, it may cause heat intolerance (cant stand hot place, need fans or air-con etc.), sweating a lot, palpitation (heart beats noticeably fast), high metabolic rate (causing you to eat a lot due to hunger), and it is common to have a neck lump. so my advice is be compliant to your medication (most cases of misdiagnosis are due to human error - either the patient missed their medication, or the doctors give the wrong prescription), and maybe consult an endocrinologist for your problem (to rule out other hormone-related problems).get well soon!
    Anonymous 42789 Replies
    • September 14, 2010
    • 00:26 PM
    • 0
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  • PLEASE URGENTLY CONSULT WITH AN ENDOCRINOLOGIST....SCARY FORETHOUGHT, but if you don't - I would be about 90% possitive that all the major organs of your body will and can begin to shut down. What area do u live in?
    Anonymous 42789 Replies
    • September 21, 2010
    • 09:25 PM
    • 0
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