Hi everyone. My name is Vicki, my 6 year-old son's name is Chanse and I've been on a very long diagnostic journey. The latest news is that my doc wants to check my salivary glands. I started having episodes of choking after simple drinks of water last fall. My problems have steadily increased since that time. I am currently on a liquid diet, as for some reason I am unable to get my food chewed up. Food just lingers in my mouth no matter how long I chew it. I've also been producing what I thought were pieces of food after eating. My current doctor actually looked at it and really listened to what I had to say. She then forwarded some fresh specimens to pathology. The pathology report said it was a combination of necrotic bone and striated muscle! I am a vegetarian. I also have debris coming from my ears and nose. It looks similar to the material I produce after I eat, but on a much smaller scale. As far as the salivary glands go, I did a little research and think my doctor may be "barking up the right tree." I'll try to give you the briefest rundown possible.

I had breast cancer in '95 at age 38. I have a very recent diagnosis of significant anemia (from suspected internal bleed) high BP (was too low a year ago), 2 nodes on my lungs, COPD secondary to emphysema (but no coughing), elevated Epstein-Barr titer, Ehlers Danlos syndrome (like Marfan syndrome) and chromosome breakage. It's been thought for 20 years that I had Sjogren's syndrome and Lupus (every doctor I've seen), but I always tested negatively for both. My eyes are dry enough that my ophthamologist put punctal plugs in last week. My mouth is so dry that my teeth recently began decaying at an alarming rate. I have a fairly recent onset of very foul halitosis. I have a lump on the back of my tongue (goes up and down in size) that so far hasn't peaked anyone's interest. I also have swelling under both sides of my chin, a lump on the side of my neck, and sinus CT showed some kind of changes on my zygoma? or temporal bone. Interesting that I have KILLER pain in that area - unlike any headache I've ever experienced. My neck feels stiff and swollen and I've had orbital and cheek swelling. I've also had occasions of swelling above my right ear. I had a sudden hearing loss in my right ear with tinnitis 20 years ago (I was only 25). The tinnitis isn't simple anymore. It's very complex, loud and now it's in both ears, as is the hearing loss. Also had a diagnosis of vestibular neuropathy (and something to do with the pressure in my tympanic membranes) in December, but was recently tested at another facility and the findings were relatively normal. I began having blurred and double vision in November. Although it comes and goes on its own, I can reproduce it by touching the inside of my nose, ear or sometimes just by bending over. I also get eye infections with swelling around both eyes. I also began noticing that my left eye sometimes looks displaced or out of line. My ophthalmologist agreed that my left eyelid looked somewhat droopy. My ears sometimes feel as though they're going to explode from pressure. I also have an area right in front of my ear that I refuse to let anyone touch as it produces excruciating pain - I perceive it as nerve pain. I have episodes of numbness in my fingers, falling to the right when I walk and I am constantly dropping things. I think my Grandmother with Parkinson's has better dexterity than I do these days.

I do have additional problems but I didn't want to write a novel while introducing myself. Does any of this "ring a bell" with anyone, or have any of you experienced similar symptoms? My body tells me that I am racing against the clock.

I eagerly await ANYONE'S reply, Vicki

I forgot to mention that I was tested for an adrenal gland tumor last fall via 24-hour urine collection. The results were slightly elevated, and my doctor at that time didn't see a need to pursue it further.

chansesmom@yahoo.com

Many of these symptoms are very troubling, and potentially dangerous. You don't mention what kind of doctors have been diganosing (or not diagnosing) you or what kind of facility you have been seen in. Your profile also doesn't say where you are, except in the US, so I can't recommend a place where you might get better answers than you have so far. What you have been told, given the complexity of your symptoms, seems woefully inadequate. Please post or email me with your information. I will then try to point you to someone, or a facility who can help you find more difiinative answers.

Hi Vicki,
I wish I could help you but I honestly haven't had any of those symptoms, in fact, one of the surprising things about head and neck cancer is it's lack of pain (pre treatment of course). Some of your symptoms are similar to my post treatment conditions but milder than your description.

I have a very close friend who has acute systemic lupus however and what you describe sounds very similar to what she has been going through. As Brian said in his post, your symptoms are "...are very troubling and potentially dangerous " and I would certainly have a head and neck surgeon do some diagnostics just to rule it out, particularly since you are a cancer survivor. Lupus management and diagnosis is a specialty in it's own right.

Most of us have to deal with dry mouth and tooth decay for us could have very serious consequences due to Osteoradionecrosis so I have had dental trays made and apply flouride several times a week as a preventative measure.

I wish I could be of more help.

Thank you for your replies. I live in Iowa and began going to the Mayo Clinic in March. They have been extremely thorough but have not yet looked at my tongue/gums, even though I mentioned it at my initial visit. I know that the combination of EDS (rare), anemia and COPD was a diagnostic challenge. My doctors may have been thrown off track by my presentation. I was at the clinic two weeks ago (I return tomorrow) and my physician was interested in checking out my salivary glands. I took photographs of my tongue and put up a website for her to see prior to my visit. I was horrified when I saw the photographs of my tongue. I suppose that's because I couldn't see as far down my throat as the camera could. The lump on my tongue (and gums) has been there for over a year, and I always thought they were due to a lupus flare-up (seem to change in size from time to time). Lupus and Sjogren's have since been ruled out by my team of doctors. I get some comfort knowing that I am being treated at one of the best facilities in the US.

Thank you again for your replies. I will keep in touch.

Vicki