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Old 01-20-2009, 06:19 AM   #1
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Severe ear pain, enlarged lymph nodes, neck pain, sometimes headaches

Please help - if anyone has any info - November 2008 I developed what I thought was an ear infection, fever, ear ache, sick - when to my local doctor and she said ear infection, gave me amoxillin. Felt worse as Thanksgiving approched, broke out in a rash - call dr and said to stop antibodic - probably allergic to it, even though I have had it over many times in the past. One week later, even worse ear pain and at one point my ear popped and has never quit hurting to this day. This is severe pain that never stops. Called dr again two weeks later, as I was unable to get off the couch. She called for bloodwork and it showed mono - dr said to do nothing and in a few weeks I would feel better, ear still killing me. One month later I am back at school barely funtioning, severe ear pain, neck hurts, back hurts, and now I can't sleep. Went to ENT who cannot figure out what is wrong - no hearing loss, same symtoms. Mom took me to oral surgeon for TMJ they said does look as if that is the problem. After three more months she sends me to ENT at Allegheny General in Pittsburgh - the best dr says. He does MRI, hearing tests, sends me to neuologist. ENT thinks it is myleria and gives me Lyrica - this only gives headaches during the time I took the prescription. Neuologist at Children's Hospital does more MRIs and said I have tumer in jugular vein. I asked for annointing at church and thank God it turned out not to be a tumor, but no one can figure out my pain. This continued from visiting all these drs again and finally ENT wants to cut the nerve in my ear, and the neulogist sends me to pain management. I am scared to have the nerve cut and pain management said they can do nothing for me. It is now one year later and everyday my ear is killing me, I have pain in my neck, enlarged nymth nodes, back pain. Please if anyone can direct me or has experienced anything like this please write back. Also I have now started losing my hair and only sleep about 4 hours a night. salboro

 
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Old 01-25-2009, 05:09 AM   #2
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Re: Severe ear pain, enlarged lymph nodes, neck pain, sometimes headaches

My G'd! I am so sorry for what you are going through! I am not sure, but I think you have an auto-immune disorder called "Hashimotos Thyroiditus"..and/or symptoms of another immune disorder that I am now forgetting the name of, but it causes rashes!!
(I cant believe I am forgetting the name of this right now...but do research online under "auto-immune diseases" and look for the one that has the symptoms including a rash. It sounds VERY much like what you are going through.

Either way, you should have hormone tests done..to check for Hashimotos and Graves disease. Both of these cause insomnia as well as mood swings, body temperature changes, fatigue altered with hyperactivity, weight loss or weight gain, and hair loss.

Go on this website under the thyroid and Hashimoto's support board.

I am pretty sure you have an auto-immnue disease. My question is, when did these symptoms start? Where you under a lot of stress?

I hope this information will help you..and that you will get well soon.....
Please let me know what you find and how you are doing.......

You have a new friend here, so try not to panic.....you will get well soon.....
KIM

Last edited by moderator2; 01-25-2009 at 06:55 AM. Reason: posted disallowed website(s)

 
Old 04-15-2009, 07:45 PM   #3
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Re: Severe ear pain, enlarged lymph nodes, neck pain, sometimes headaches

I don't know if nerve damage can be caused by the mono virus (EBV), but if you did suffer nerve damage from an infection it could take a very long time to heal, and that assumes the infection gets under control. Your lymph nodes make me think you're still dealing with something. I wonder if it could be lyme disease. It can cause all your symptoms and more, and doctors are usually clueless about it. Any chance you might have come into contact with a tick at some point? Good luck, I recommend doing some research on lyme. It's a hugely debated disease.

 
Old 04-16-2009, 11:01 AM   #4
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Re: Severe ear pain, enlarged lymph nodes, neck pain, sometimes headaches

Quote:
Originally Posted by greatballsofire View Post
... I wonder if it could be lyme disease. It can cause all your symptoms and more, and doctors are usually clueless about it. Any chance you might have come into contact with a tick at some point? Good luck, I recommend doing some research on lyme. It's a hugely debated disease.
I would very much agree!!

Bethsheba

 
Old 04-20-2009, 05:16 AM   #5
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Re: Severe ear pain, enlarged lymph nodes, neck pain, sometimes headaches

This started in November 2007 - first severe ear pain, high fever, then a rash followed - you really think lyme?

 
Old 04-20-2009, 11:17 AM   #6
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Re: Severe ear pain, enlarged lymph nodes, neck pain, sometimes headaches

sounds terrible, you should really keep looking into what is wrong, dont give up, keep trying diff docs that will try to find whats wrong.

 
Old 04-21-2009, 02:08 AM   #7
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Re: Severe ear pain, enlarged lymph nodes, neck pain, sometimes headaches

Quote:
Originally Posted by salboro View Post
This started in November 2007 - first severe ear pain, high fever, then a rash followed - you really think lyme?
Hi there..
I just read this last post which was emailed to me. I truly hope u will find the RIGHT DR TO HELP U, SOON! I have had so many problems finding the right Dr for myself, because I have a thyroid issue that most Dr's dont recognize, called Wilsons Thyroid Syndrome (more on this later, and u can also look it up if you want to know more about it).
NOW..AS FOR YOU.. I do believe, from what it sounds like, that u could very well have lyme disease. PLEASE PLEASE PLEASE, FIND A DR WHO KNOWS ABOUT LYME DISEASE! THERE IS A SPECIFIC TEST FOR THIS! DO SEARCHES ONLINE ABOUT IT AND FIND MORE SUPPORT GROUPS FOR PEOPLE WHO HAVE BEEN DIAGNOSED AND CURED OF LYME DISEASE! PLEASE, ALSO STAY IN TOUCH WITH ME. WRITE ON THIS BOARD TO ME AND I WILL GET THE EMAILS WHEN YOUR POST GOES UP. MY PRAYERS ARE WITH YOU. I AM STILL TRYING TO FIND THE RIGHT DR FOR MYSELF. PLEASE LET ME KNOW WHAT HAPPENS WITH YOUR ILLNESS!!!!!! I WILL BE WAITING TO HEAR MORE FROM U, SOON!
I WANT TO HEAR THAT U FOUND THE RIGHT (DISEASE) SPECIALIST AND THAT THEY HAVE DIAGNOSED YOU..AND FOUND U A CURE...
KIM

 
Old 04-21-2009, 02:28 AM   #8
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Re: Severe ear pain, enlarged lymph nodes, neck pain, sometimes headaches

Quote:
Originally Posted by salboro View Post
This started in November 2007 - first severe ear pain, high fever, then a rash followed - you really think lyme?
===> Deleted <====

..please get well soon, and let me know what is happening!!
Kim

Last edited by hb-mod; 04-21-2009 at 05:25 AM. Reason: Please don't post links to commercial websites as per Posting Policy. Thanks.

 
Old 06-07-2009, 03:04 AM   #9
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Re: Severe ear pain, enlarged lymph nodes, neck pain, sometimes headaches

I just saw your post while doing search for ear pain and neck pain. I am so sorry you have had to deal with so much so young.

I have very similar symptons but I have been sick for 12 years with an autoimmne disease that is yet to receive a firm diagnsis. So even though my pain is similar is comes with a whole constellation of systemic problems.

Did you ever find out what was causes your problem? I too have been told the only relief for the pain is to cut the nerve in my neck.

 
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