Discussions By Condition: I cannot get a diagnosis.

Everyone thinks I'm crazy!!! Please help!!!

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: stacylynn
  • May 4, 2007
  • 06:36 AM

:confused: :( When I tell people, even doctors, what is wrong they act like I am either crazy or making it up. About two years ago I started getting this intense tingling pain in my jaw that would come on suddenly and numbness in my lips. I had some blood tests and my white blood cell count was low and my results for inflamatory in the cells was very elevated. When the doctor pressed on my glands under the back of my jaw the pain came.

I dont know if it has anything to do with it, but I also developed blood clots about 4 months ago...

Someone please help if you can!!!!

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16 Replies:

  • Forgot to add that he said that it could possibly be Sjogren's disease according to the blood tests, but that it didnt exactly sound like that, I do get dry eyes once in a while but never dry mouth.
    Anonymous 42789 Replies Flag this Response
  • stacylynn...please visit www.ahummingbirdsguide.com your symptoms are there as well as several others...I'm being checked for ME right now...there are hundreds of people on this site with ME sx...write down as many as you have no matter how trivial or how severe...take info to Dr if you feel this may be your case...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Stacy...look around this site where I (mommy cat) has posted...there you will find people with ME sx from tingling, jaw pain to people like myself going so far as having stroke-like sx...I am a nurse and I'm not crazy either...all these people with ME sx have been sent to psychiatrists and been accused of being hypochondriacs...PLEASE look at site...there may be other sx you have that don't have any rhyme or reason that you don't think of...Good Luck sweetheart...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Thanks, Ill give it a look...
    Anonymous 42789 Replies Flag this Response
  • http://i171.photobucket.com/albums/u298/hogndog/bcs.gif Mommy cat has an excellent link there. I browesed through it and found some real good avenues for you to pursue. I've watch Hummingbirrds and the amout of muscle power they need is nothing short of a miracle. Yes by all means, I support her find 100%.
    hogndog 426 Replies Flag this Response
  • :confused: :( When I tell people, even doctors, what is wrong they act like I am either crazy or making it up. About two years ago I started getting this intense tingling pain in my jaw that would come on suddenly and numbness in my lips. I had some blood tests and my white blood cell count was low and my results for inflamatory in the cells was very elevated. When the doctor pressed on my glands under the back of my jaw the pain came. I dont know if it has anything to do with it, but I also developed blood clots about 4 months ago... Someone please help if you can!!!! What explanation did doctors give you for elevated results for inflamatory cells? Were those tests recent? Are they pursuing the reason? I'm wondering if it could be an abscessed tooth (or maybe TMJ except for elevated test which wouldn't make sense, I don't think). Do you go to a GOOD dentist? Did you had any dental work done within a year or so of onset? Have you had dental x-rays & panagram done? I will tell you that I suffered with incredible jaw pain for well over two years...had all the x-rays, panagram, as well as CT & MRI of my jaw. Nothing showed. It wasn't until my dentist got tired of my desperate phone calls that she noticed one of my teeth was just a tad bit loose as well as sensitive to cold. She drilled in and found the tooth abscessed with just a small amount of live nerve left. "These things just happen sometime" was the remark of one of the oral SPECIALISTS I'd been going to (grrrrr). DO NOT let doctors tell you that you are crazy. I get so darn mad when I hear that. It's very, very common - if they can't find it, then you must be making it up. I know there are some good doctors, but I truly believe that there are many who hurt more than they help by making a patient doubt their own sanity. I think a doctor should BELIEVE a patient who comes in with very specific symptoms, and tell you if they don't know. These days it's too much to ask that they research your symptoms themselves (no doctor can possibly know everything), but they should be referring you to specialties that might offer answers instead of leaving you hanging. That is where most of us are on this Forum. OK, that was my rant for the day.:) I hope this helped in some way. Oh and I also wanted to mention that there is a huge lack of communication and knowledge between regular medical doctors and those that deal with dental problems ie dentists, periodontists, oral surgeons, etc. In other words, if your problem IS dental, no regular MD is going to have a clue.Jeanor as Mommy Cat might call me - Jeanie Beanie :D
    Jean Marie 38 Replies Flag this Response
  • :) I did a liittle follow up on this; looked it over carefully. When I do a search I try to find a site that gives you information but doesn't anything http://www.cfs-news.org/me.htm I sure hope this may be of some help. Just keep on hopen on.;)
    hogndog 426 Replies Flag this Response
  • http://www.cfs-news.org/me.htm This is a site that in all apearance seemed o.k. No cash. Hope it helps you.;)
    hogndog 426 Replies Flag this Response
  • Dear hogndog...thank you for your support...I'm gathering quite a following here...It's so wonderful for so many to be able to figure their illnesses out yet, it feels like opening Pandora's Box...I'll be in touch...mommy cat
    mommy cat 1654 Replies Flag this Response
  • JeannieBeannie...Mommy Cat...Just to let you know...had MRI of neck in April...showed enlarged lymph glands...ENT Dr. wants to biopsy them...I find ME info...one of several sx is enlarged lymph glands...along with about 65 other sx that I used to always "chalk up" to something else...after all, I'm a nurse...I can justify anything...out of time...I'll answer more questions later or Mon am...Be well, Sweetheart...mommy cat
    mommy cat 1654 Replies Flag this Response
  • http://www.myutmost.org/addnl/search.html Here; take this it's a present for all of the hard work you do. I hope that you enjoy these pages as much as I have over the years. Anyone else please feel free to read them as well. :)
    hogndog 426 Replies Flag this Response
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  • tears...Thank you...gotta go...my keyboard is leaking...LOL...mommy cat
    mommy cat 1654 Replies Flag this Response
  • :) You are most welcome, the same thing happens to me*
    hogndog 426 Replies Flag this Response
  • low white blood cells...elevated inflammatory cells...Stacy...I have the same thing...have you looked at hummingbird site???/.....mommy cat
    mommy cat 1654 Replies Flag this Response
  • It wouldnt let me download any of the text!!! What does it say? I will try again. to jeanie-beanie,no dental work done in qute a while, but perhaps i should get a checkup.I think it has something to do with the glands right behind and below my jaw... the submandibular gland...thank you all for your suppor!!!stacylynn
    Anonymous 42789 Replies Flag this Response
  • stace...google "symptoms of Myalgic Encephalomyelitis" there are MANY people on this site alone with sx including myself outbreak in the 80's I believe there was one in our school...viral...contagious(even through breathing) 20 yrs later...all kinds of people are having symptoms read where I've posted Stacy...you'll see it all too clearly.Good Luck Sweetie...mommy cat
    mommy cat 1654 Replies Flag this Response
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