1st time Salivary gland swelling questions, Calling Dr. in the am.

[mistyrain]

quietd: glad to hear you are feeling better and you will know if the ear clears, that it was related to the teeth infection also.  Sorry I did not fully realize that the ENT had ruled out gland issues all together - I was still thinking in terms of the sublingual symptoms you were experiencing also.

Way back in the dark ages I think my first symptoms of sjogren's were teeth related and think there is a strong relationship to bacteria in teeth and sjogren's - which came first - the dry mouth - tmj/neuralgia/headaches  or the toothaches - can't remember that far back but I suddenly had a lot of serious problems in my 30's  but years before they found very high sjogren's SS-A SS-B.

[quietdynamics]

Mistyrain,, finding an ENT was another 'golden prize' in the unexpected day.
My right ear is still painful. and we will meet to discuss possible Autoimmune Inner Ear Disease.
Proceed from there.
Saw on my cell phone Penn SjS Center did return my call.
Hope to connect with them tomorrow. 

A process.
Jaw and site of extractions (2) are doing very well.
I consider myself very lucky.
Hoping for a bit of a lull now. Time to caught my breath and DH too.
With the high doses of anti-biotic the rashes and scaling on my forehead ( I cut bangs to cover it) are almost gone and smooth.. like old times..  make a note to tell Dr.  and I did sleep most of yesterday.. not in SJS crash mode. Better sleep...lighter, and refreshing.
Maybe I will wear them back tomorrow.. 

[mistyrain]

quietdynamics: sounds like you are healing fast - all the best on all the next steps.

[wildforwater]

Wow, what an ordeal!  So happy you found a great team of doctors. Hope you feel better really soon!

Hugs,
Maria

[quietdynamics]

Thank you..
Crashed around noon and woke around 4pm.. hate wasting the day.
But, just could not keep my eyes open.

Now my to-do list is growing.
And I have had a right-side temple headache that I had hoped was stress/pain related and would go away .. still there. Darn.

Interestly, now that the swelling, infection, has been adressed.. I can feel how much my ear hurts in and of its own... so glad I have an ENT now.. lol.

Found myself yesterday revisiting in my mind some of the talks I had with prior Drs., Dentists, even Gyno, Endo about concerns.. things just not right..

Then stopped myself because I can't change that distance past.
It was long before every home had a computer.. library at our fingertips.
A more naive time.

So even though Drs. of the past not listening to me saddens me.
As with the spoon theory and physical energy, I try to be judicious with were I spend my emotional energy.

[irish]

Sounds like you had a good day with some new info and relief of some tooth pain. Sjogrens is a slow revolution. I lost all my teeth eventually but had the dentists listened to me and pulled them much earlier I would have saved myself a lot of money, a lot of terrible infections and antibiotics and a lot of pain and misery. The best thing--hands down---I ever did for myself was get my teeth pulled.

The running around trying to take care of my teeth almost exhausted me. No one ever thought that I might have Sjogrens. When I look back I think---how could they not!!!!

I lost the hearing in my ear and learned to live with it---makes life a little more complicated. Best thing about it is sleeping on the good ear and not hearing any external noise when you sleep. Bad thing is---hubby passed away 3 weeks ago and he always woke me up cause I would never hear the alarm clock. Told the kids I would get a wind up Big Ben and hang it on the bed post and they would have to scrape me off the ceiling in the morning after it went off.

Above all, one must not give up fighting this battle. Life is short and even with lousy illnesses there are times when we enjoy life a lot and we have to learn to agonize and grit our teeth through all the brain fog and pain. Keep on with the fight, girl and you will not regret it. Irish

[quietdynamics]

Thank you Irish,
It was due to your post and that of others that I had the clarity of mind to say to the Surgeon " I do no want an oral money pit.. am I a candidate for implants or not? In your opinion?" He said no.. due to bone loss.

So I will get the last dental x-rays.
Recently, I was just siting in the window flossing and do oral cleaning and "I' thought the lower bone looked different, less then,, tried to google images for comparison? Maybe anti-seizure meds at the dose I take? Need bone density test and those x rays for a valid comparison if there is one to be  made. Tooth enamel looked striated, sometimes starting towards transparent? at edges .. bought ProEnamel. All that time without the proper saliva and all the protection it offers. Including the right balance of pro and con oral bacteria.

I was not going to revisit the past, but, perhaps it may alert a newcomer.
The Dentist where I went when my back two teeth broke was focused on doing what I considered necessary but secondary work after my express concern about receeding gums and two teeth that broke on a raw almond (folks they are not that hard).
I was single mom with two children just starting high school then, finishing up the year teaching in a juvenile facility and doing research towards my masters degree. After work I would get into the car and want to cry, as I did not think I could make it home ( a short drive) nor even stop to buy food on the way. That summer was the first time I did not do the summer equestrian program with children and crashed, only able to eat yogurt and bouncing off wall. I paid for the dental and actually never made it back .. just kept a temporary bridge.
When I finally go to a Rheum which I found by way of Special ED law, not the GP (who labled me overstressed single mom, take anti-depressants and see a therapist.. Thank the higher powers for that Law course!!)... and was told SJS .. I thought yeah.. pills / sicca.. I will be fine. They ruled out MS .. so relief. GP said "SJS you can have a full and normal life" yee.ha.
then dx changed to lupus/sjs... changed, changed , changed,

GP .. had sympathy for Lupus/ SJS... but, not SJS alone.  Totally different attitude, demeanor.
When lupus was dropped.. I did not bother telling him.. lol. At that point I was only using his name for referrals anyway. Calling in and requesting them. Staff working the desk had been one of my students so I took advantage of the short 'visit'. Hear update on her college courses.
Vertigo, then Tinnitus in 2011.. pat on the head 'Sometimes it happens"
Gee .. say something original.
So the recent post on inner ear autoimmune caught me interest .. showed it to DH.. hmm prednisone
Mentioned this to second Dr. the ENT I saw on Monday. And will make appt to discuss with her now that she saw prolaspe in both ears and finally someone got wax out... jaw done.
Ear is aching, So more than likely not connected. No wonder I was falling apart trying to do all this estate stuff.
Without all this stuff.. I must be a force to be reckoned with...lol
As must we all.

Oh Irish.. 3 weeks.  Early on I would often feel uncomfortable when people would say they were sorry for my lose of my mother.. and I was still in the period of relief that she was free from her disease.. I was just so focus that she was free. but, she was not a spouse, a husband, snuggle bunny.

"Told the kids I would get a wind up Big Ben and hang it on the bed post and they would have to scrape me off the ceiling in the morning after it went off."

**Tell the kids we want the video! lol

Remember how great and fresh and sparkly you would feel when you first dove into a pool... I want to feel alive like that, not weighted down by malaise, concerns, blindsided by the next symptoms and constant noise... just dive in to a clean pool refreshing pool and see the sparkle of the water drops and hear them only. Lie on my back, feel light and float, gently let the water play through my fingers.

So adjustments.. a hotel with a heated indoor pool , during the week, when it is likely empty. 
Maybe one day.
Maybe one day soon. 

So I am beyond fighting this. There is no cure, I must make peace with this body, encourage it when it feels well and pamper it when it does not. Just as I would someone else. I am kind and less judgmental of my abilities now.
Each day stands on its own merrits and by my nature I look for the lessons so I can pass them on.

I am at the point of conservation.
Of each day, hour.. has the potential to give and/or receive a blessing.
For every effort and kindness I look people straight in their eyes and say "Thank you. I really appreciate what you did for me."  Including each member of my family down to our 5 year old granddaughter. It is important to me that they know, that I know my illness is about them too.

Well, that went off on a tangent..

[cccourt1942]

(Don't you wish sometimes getting old records and finding things overlooked could at least be the basis for a Dr. complaint. ) Anyway, I think I should pick up the other Dentist xrays for at least a comparison as to measure of bone lose.

You know?  I have always said this is why it's called "practicing medicine." 

[KRNLMBCH]

SO sorry to hear you are experiencing this pain!  I wish you the best of luck and hope the Dr. appt. went well.  I have been dealing with swollen parotid, submandibular and sub mental glands since February, 2013.  First it was just the parotid.  I had a "scope" surgery
(I can't remember the name or how to spell it) anyway there were no stones, no obstructions,and I was referred to Rheumy?I got a 2nd opinion, which led to a fine needle biopsy which showed nothing but it was not cancer.  The meds I take for my AI disease does not help with the swollen and (red) salivary glands.  Due to the Sjogrens, some of my glands have been destroyed and they no longer produce saliva.  My parotid gland (which started this whole thing) seems to have resolved (for now) but my submandibular and sub mental glands are in a chronic state of pain, swelling, redness.  My Rheumy prefers to IGNORE this part of my illness.  I am still desperate for an ANSWER and a cure for the swelling, pain, and redness.  Recently went to a dermatologist who is now treating the "rash" that covers the swollen salivary glands.  Hoping I'll finally get some relief and ANSWERS.  Please let me know how you made out at the Dr.'s and I wish you the best of luck with getting the treatment and relief you need and deserve.
"

[quietdynamics]

KRNLMBCH
You are outside of Philly.. have you contacted the Sjogrens Center there, Penn Medical?
http://www.pennmedicine.org/providers/Results.aspx?lid=2886
An ENT would need to follow up on the glands. So happy it is not cancer. Last panel, treating Rheum tested for Leukemia .. negative.
Not sure if you Rheum is ignoring you, as gland would be outside scope of that field.
The Dr. who did the "scope" surgery.. did not follow up.. give you a referral with an ENT. 

I had read re: dental, to get check up every 4 months? and perhaps the coating young children get for their teeth. Water pik, chew sugarfree gum with xylitol to promote saliva and clean teeth. Perhaps why despite all of this I have not have a lot of gumline cavities... go figure. Well I think I have two small ones now. Of course under the gums I cannot see?

Wonder if ph paper would help others.. or just make them neurotic? 

I do use my toothbrush to massage my gums, insides of glands.. (I put my hand on outside of cheek and use brush inside to massage) and lastly my lips to clean skin cells and stimulate all of the above. Doesn't take much time before bed.

Feeling better.
Thinking the swelling was in sublingual gland and reading about, biospy, etc. All in all, not what I expected .. but, glands intact and I feel lucky.  Thank you.