Fluterby, Trinity Royal, Susie Star...others ... "dental stuff!" help + UPDATE

[Nomad]

It's been seven months of weirdness, but there has been some slight improvement with my situation. I am on 150 mgs. of Lyrica. I got a sore throat and my doctor (GP) put me on an antibiotic and strangely, the ear pain improved a little. I also had an MRI and it showed some mild inflamation in in my Mastoid. What is very intresting to me is that I have pain in front of my ear and one of you here (Fluterby???) mentioned that there is a gland there that can become inflamed with Sjorgen's Syndrome. I gently asked two ENTs, and a Neurologist about this area and all three said NO, don't understand why in the world that area would hurt, but, honestly, IT DOES! If I lay on it at night...WATCH OUT! IT HURTS! My ENT was on vacation and I saw his partner yesterday and he was bordering on rude. HE said that the mastoid inflamation could be anything...possibly an old ear infection. He said the area in front of my ear that hurts doesn't make sense to him. He said that my ear hurts less 'cause the antibiotic my gp put me on for the sore throat has something in it that helps with inflamation. Then he practically kicked me out of the room. He phoned in Augmentin, but said not to take it if I notice continue improvement with my ear pain....never addresses the pain in front of my ear. I also have a swollen gland in my EYE...same side. I see the rheumatologist at the very end of Novemember and pray to God that he knows something. Where in the world do I find someone who is an expert on Sjorgen's Syndrome? These guys seem to know NOTHING AND I"M NOT EXAGGERATING.

To make matters worse, I have terrible side pain at the moment. I have had mild pelvic floor disfunction in the past, but an x-ray showed I have a few kidney stones on the right side...couldn't be worse...cause my right kidney is atrophied and scarred. It has been painful. Just when the ear pain is getting a little better (with the exception of the area on the front side of my face/in front of the right ear and a little in the ear and a little in the mastoid). This has been tough...but I am tougher.

Any thoughts? Any knowledge of Sjorgen's? Any help would be appreciated. How and at this point, with the LACK of knowledge around this town, I'm hesitant to go to the dentist EVER in my area and would even consider flying somewhere, certainly for any major work.

HELP!

 

[trinityroyal]

Nomad, years ago I took a course on Adult Learning Styles for work. They had an entire unit devoted to Doctors, who can get downright hostile when confronted by something they don't know. Apparently it interferes with their ability to be The Expert, so they like to learn new things in secret. With you presenting the doctor with something about which he knows nothing, I'm not surprised he got frustrated and angry. No excuse for his behaviour, but not unsurprising.

Anyway, to the issue at hand, I just did some research on Sjogrens Syndrome on the Mayo Clinic website. The symptoms list they provide includes:

Some people with Sjogren's syndrome also experience one or more of the following:

• Joint pain, swelling and stiffness
• Swollen salivary glands — particularly the set located behind your jaw and in front of your ears
• Skin rashes or dry skin
• Vaginal dryness
• Persistent dry cough
• Prolonged fatigue

http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147/DSECTION=symptoms

Sounds to me like Swollen salivary glands describes your symptoms. I have had swollen salivary glands under my jaw before, and it is terribly painful.

I hope you're able to find a doctor who will listen to you and do some research. I've included the link from the Mayo Clinic.

Hope you feel better soon.
Trinity

 

[Fran]

Nomad, I have a life long friend who has suffered from RA, lupus and she was worked up for Sjorgen's Syndrome. I will contact her and find out what sort of specialists she saw or at the very least where she found accurate info.

 

[Nomad]

Thank you everyone and the more info I can get, the better. At one point, I had some glands on the inside of my cheek that were swollen and the oral surgeon said that they were salivary glands. However, he didn't recognize that the glands in front of my ears could be related. Actually, NO ONE HAS. I suspect that my rheumatologist might know more...not sure. I did see him when I first started with all of this and he did diagnosis me with the Sjorgen's Syndrome (based on the results of an antibody test and symptoms) and he said we would discuss more of this at our next appointment., which is at the very end of Nov.

I remember him as a young doctor. At that time, my lupus was active and very difficult. When I had a problem, I just called and got an appointment and it would be with-i a reasonable amount of time.

The current situation with my rheumatologist is INSANE. He triple books. At my last appointment., I waited 2 hours a 45 minutes before seeing him and then he was a little rushed through the appointment. It takes 2 months to see him. There is no such thing as an emergency. I understand he has a PA now, so I suppose you would probably be able to see him or her if you had an emergency. But, I'm getting the impression that Sjorgen's Syndrome is not good on folk's radar. He is a good doctor though, but it is tough getting an appointment and I'm having weird/painful problems now and not getting good answers...worse than that....some doctors like the last ENT are treating me in a shabby manner.

The medical treatment in my city is disturbing.

I may have mentioned that a friend of mine has a brother who is a doctor in another state. He came here to visit. He hurt his eye and went to the ER. He was not given any special tx, just because he is a doctor. Ok. But, then he said he was given SHABBY treatment and an incorrect diagnosis. He had to fly home (a great distance) to get good treatment. When he got the doctor's bill, he called them and said that if they send him another bill, he will sue them.

I have a bill from my first dentist, the one that messed up. It took her three months (not exaggerating) to put in a crown...there were multiple weird and painful mistakes. This was to replace a onlay....there was no pain, no fever, no issues at all at the beginning...it just fell off. She insisted on putting a crown on instead. I then had great pain, no crown...ended up with a root canal, removal of the tooth, ear pain and a contstant fever. I switched dentists and even though I told him I had lupus, he insisted on putting in a graft. OMG! More big problems. Then, that had to be removed. I have spent THOUSANDS of dollars for a tooth that never bothered me...even a little. Nada.
The first dentist that started this cascade of horror, just sent me a bill for $400. When hell freezes over.....

Anyway, between my dental issues, Sjorgen's (whch was quiet until this mess), and my kidney issues...the pain has been very very tough.

 

[recoveringenabler]

I'm so sorry Nomad, I just wanted you to know I have been following your posts and although I have no advice at all, I so sympathize with you, all that pain, the run around by the Doctors, what a long and painful journey you've been on. I will say a prayer for you and send you very gentle hugs with the hopes that you find answers and you get your complete health back as soon as possible...........

 

[flutterby]

Nomad, the large salivary glands in front of your ears are called the parotid glands. They can become inflamed and swollen and look like mumps. Mine have never gotten that large, but they have become swollen and it is painful. Fever is common with it. (I also have a perpetually swollen gland inside my cheek - has been that way for years.)

During such attacks, the parotid gland becomes quite painful and swollen; there can be fever. Antibiotics don’t always work in this situation, and the pain and swelling usually abate spontaneously over 2-3 weeks. If this scenario recurs often, the glands risk becoming chronically infected, necessitating removal.

http://www.parkhurstexchange.com/clinical-reviews/dec08-p67

Honestly, if your ENTs don't know about them or are dismissive, you need to find a new doctor. I'd find a new doctor just because of their attitude. I have no visible or palpable salivary glands on the inside of my lips (you can normally feel the bumps if you run your tongue along your inner lip, or see them if you pull your lip down and look in the mirror), and my ENT was planning on doing a biopsy of the parotid gland. It's trickier because your main facial nerve runs through that area (another reason it becomes so painful). However, I had one little salivary gland pop up the day of the procedure and they biopsied that. (For the record, the results were negative, but I'm not convinced - they are supposed to take more than one gland for biopsy. Plus, I have things I have tested positive for and either have no symptoms or my symptoms are the exact opposite of what they should be. I'm a major medical skeptic.)

And be prepared for a lot of dental issues. There are products you can use to help, but there is only so much you can do. Nothing can replace the dental benefits of your own saliva. Biotene makes a lot of products for dry mouth, but mostly they just make you feel better.