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Still undiagnosed problems - a saga

Posted by @margot in Eye, Ear, Nose & Throat, Dec 29, 2011

Just found these boards and have been reading some of the discussions. I, like a few others, have a real saga going on here. Started about 4 years ago with, what I thought, was post-nasal drip. I then felt unwell and lost about 40-45 lbs. Had a bilateral oopherectomy and had major stomach problems after that. During this time, I also started suffering from dry mouth and throat issues. To make a very long story shorter, I have since developed chronic dry mouth and throat with a feeling of a mucus-type feeling from behind my left sinus, plugged ear now and down my throat. It is now constant and has kept me almost house-bound. Like I said, a long story but I have had some other symptoms and have seen multiple ENT docs, had biopsies and scopes done and no diagnosis. The tissue in my mouth and throat just doesn't feel right. I often have a coating on my tongue. This is now causing gum recession and my top teeth are loose. I need a gum graft but can't even imagine how I would get through that with the mouth and throat problems. I've had numerous blood testing done along with CT scans and MRI's, colonoscopy and recently a cardiovascular angiogram and they just cannot find anything specific. I've had blood work and 2 biopsies done for Sjorgens, which were negative. I do have thyroid nodules which have been scanned and biopsies twice. Luckily, no malignancy and they say this is not causing my problem,. I feel generally unwell daily now always conscious of my dry mouth and throat and problems swallowing. My
ENT docs have pretty much dumped me saying they can't do any more for me
and don't know what is wrong. My dentists don't know what's wrong. My latest appt was a self-referral to UCSF Oral Medicine clinic, which I researched on the Internet. The doc I was supposed to see was out for the day so saw another. He said the glands under my chin are producing saliva but, doing a collection test and exam, he says I am producing very little saliva and he could get next to none from the Parotid glands. He suggested I try an anti-fungal logenge for two weeks, which I just started today and hope I don't have side effects from it. I've had more problems with meds they try to give me so I just take Alprazolam (Xanax) as needed at a very low dose, like 1/2 of a .5 mg tab twice a day. Yesterday was a bad mouth/throat/swallowing day so I took an extra 1/2 tab. I have been on this medication for about 4 years now. Cutting down has not improved the mouth and throat issues.
I've had some stomach issues through all this. I started to break out in petechia and puprua (?) which the docs say is normal and attribute to my age, 62. Seemed to happen rather suddenly. Had my doc check my clotting factor and it was normal. Endocronologist put me on Vit D for Osteo and my doc put me on B-12, which is normal now. Except for some Tums or Pepto on occasion, that is all I take. I just constantly feel plugged up, feeling of mucus in my throat and just generally feel unwell, to the point that I want to go to the ER but, like my husband says, what the hell are they going to find or do? I also have a slight feeling of nausea almost all the time. I can eat and swallow, hard time with pills, and I can taste.
I am at my wit's end with this. How can people get these odd diseases diagnosed and nobody can figure this out? Someone suggested I see an infectious disease specialist (which is about the only one I haven't seen). I did insist my PCP do a culture of my nose and throat for staph, as my husband had an infection about the time this all started with me. It was negative. Some of these tests haven't been done for a while but, like I said, the docs are pretty much giving up on me. One suggested I try acupuncture, which I did. It helped my sciatic pain but not the mouth and throat issues. Yes, I've gone for counseling and saw two psychiatrists who do not feel this is a psychiatric issue. One said hopefully I'll get lucky and find a doc who can figure this out. Most of the ENT docs want to blame it on GERD, which I have been tested for and treated for with no change. Last doc at Stanford told me to stop the Nexium as, while taking it, I had a rib fracture. It never made a difference anyway. All this causes me anxiety on bad days and is driving me nuts and affecting family members. I can understand that. You get to retirement age, think you are going to enjoy some traveling and then this happens.
Any ideas? I am truly at the end of my rope with this.

Tags: Infectious Disease


Posted by @anon89880224, Jan 6, 2012

Cystic fibrosis
Sickle cell disease
Dry mouth syndrome


Posted by @anon89880224, Jan 6, 2012

Kidney failure

Anonymous likes this

Posted by @anon89880224, Jan 6, 2012

Iron poisoning??


Posted by @anon89880224, Jan 6, 2012



Posted by @margot, Jul 10, 2012

I have had numerous blood tests which would have picked those up. Not only the dry mouth and throat the "tissue" does not feel right


Posted by @juliann, May 11, 2012

Parotid gland/salivory gland problems - email me - same problems


Posted by @margot, Jul 22, 2012

I have had two biopsies, lip and parotid. Negative


Posted by @cynthiabstevens, Jun 27, 2012


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