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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