Discussions By Condition: I cannot get a diagnosis.


Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: frustrated74
  • May 17, 2008
  • 08:15 AM

I am 33 years old female and I can not get any answer from why tongue keeps swelling. It all started a year ago my tongue would swell up for a few hours then go back down and this happened about twice a month for six months. Doctors could not figure it out. It swells more the width way as opposed to getting fat but I am unable to see down my throat when this happens. Well after six months of trying to figure it out. It started happening all the time. Now a days it usually happens everyday and sometimes it will be like that for 2 weeks at a time. So I am biting it when I talk and eat so by the end of the day I am very moody from constantly biting it.

I also have abnormal labs. Sedimentation rate is in the upper 50s and C-reactive protein. CRP is 34. Urinalysis only showed 3+ protein.

I am on no medication. I have no known food allergies, take tons of tests. I do carry an Epi-Pen in case.

I do have gastroesophageal reflux disease, irritable bowel syndrome, and Raynaud’s syndrome. But do not take medications for any of these until my tongue gets under control. I also have migraines and do take medication as needed but not very often and usually Tylenol. I have had these since I was 12.

I have seen an ear, nose and throat doctor. An allergist who ran tons of allergy tests and all negative. I have been to the emergency room numerous times. Rheumatologist said thyroid but all tests for that are normal. Gastroenterologist, I had a colostomy and it was negative. So yesterday I finally had a tongue biopsy to see if that can tell us anything. I am afraid I will never get answers. I was thinking maybe I should see a cardiologist because of the high CRP levels but the doctor says no.

Anyone have any ideas??

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5 Replies:

  • CRP just means there is inflammationin the body-- it is a non-specific finding. Did anyone consider hereditary angioedema? Try here: www.haea.org
    aquila 1263 Replies Flag this Response
  • No, but I see the doctor in two days and I will mention it to her. Thanks
    frustrated74 1 Replies Flag this Response
  • They don't test for amino-acid based food additives, Monosodium Glutamate and Aspartame. Most likely, what's bothering you. Go totally organic and learn the names that the additives use to hide the fact that they are what they are. You could also be having a dental reaction.http://www.msgtruth.org/
    Monsterlove 2921 Replies Flag this Response
  • hypothyroid (low thyroid or low thryoid caused by Hashimotos) can cause swollen tongue.
    Joan5555 316 Replies Flag this Response
  • [Try seeing a nephrologist--(Kidney specialist) A 3+ protein in the urine is not good.
    Anonymous 42789 Replies Flag this Response
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