I got my conclusive diagnosis of ' Sjogren's Syndrome ', by my
Doctor of Infectious Diseases YESTERDAY, although I have had the
symptoms for months.
This is very disturbing to me, as I have ' Chronic Epstein Barr Virus ' ALSO !
And, of course all the other virus's that go along with this.......,
Needless to say, I am most upset and very sick.
There is one symtome I haven't heard much about, when it comes to the
' Sjogren's Syndrome ' subject.
I have swollen, painful parotid glands. And, I have had, for months !
My glands that are just under my earlobes, and into my cheeks, about the
size of a large egg. It is so embarrassing to me.........,
Any input, advice or encouragement would be greatly appreciated......,
The Following User Says Thank You to terrienne For This Useful Post: heartfelt29 (02-13-2012)
Well, I suppose you could be happy that you know for sure what you have and now you can look foward to treatments and what not.
As for your Swollen parotid glands. My doctor askes me every time I come in for a check up if I have pain in the upper jaw area. Now that I saw your other post and you said that these are your saliva glands I understand why they are so big. Your mouth I'm thinking is so dried out that it is causing these glands to swell. Is your doctor putting you on meds? I take the generic for Salgen which helps you creat more saliva in the mouth.
Hang in there and the best words of advice I can give you is. DO LOTS OF REASEACH on your own! It will get better in time and now that you know and your doctor knows for sure what's going on you can make things better.
Good Luck and keep us informed!
Last edited by MilkNWheat; 04-05-2005 at 06:27 PM.
Wow...When did they start a Sjogrens board here??? I must not be very observant. Anyway Geegee, I have Lupus with secondary Sjogrens and a few months ago I developed a large sore lump at the angle of my jaw. I thought I had Lymphoma, since we have a much greater chance of getting that with this syndrome. It turned out to be an infected parotid gland and the whole side of my face swelled. Antibiotics took care of it quickly. I didn't even know we had salivary glands that high up, and I am in the Medical field! My lymph glands are always huge and I find that when I take a course of Prednisone that they go down for a while. But if yours is painful and swollen, I would suspect it's plugged and infected. You should ask for a broad spectrum antibiotic and see if that helps. It can't hurt. Good luck...Carol
Thanks for your Reply, I didn't see it until a few minutes ago....,
I just thought I was sick, looking back at my last post on here !
" THIS WEEK IS HORRIBLE !!! "
I look like I have a case of full blown MUMPS !!! I am swelled up like a
Bulldog ! I am past the chipmunk stage !lol.
I have been in bed since the weekend, with a fever, and in extreme PAIN !
It's like sharp-shooting pains, in these glands.
I can't chew very well, so I have been on my soup diet. Yuck ! Oh, but I
look forward to that icecream ! (Half melted, of course !)
I called my Doctor on Monday, and of course, he is OUT this week !
I don't guess it matters though, He says there's nothing he can do for me...,
I just HATE that ****, don't you ?
Carol, I am so sorry to hear that you have LUPUS and THIS ! Aparently, this
Sjogren's Syndrome is hard to diagnose, and from all of my searching,
it takes a long time to get one, for some reason.
But, I do know my diagnosis is conclusive.
One of the things I don't get, is swelling of the parotid glands is a HUGE
symptom ! I think my heart jumped up in my throat when I saw some photos,
cuz, I thought, Ohhhhh, Nooooooo, surely my glands want be swollen this
bad ! Well, heeeeere they are...... !
My Doctor told me that they would swell up, go down, and swell back up.
But, this is CRAZY !
This has been going on since ' JUNE ' !
I hear what you are saying about the Antibiotics ! During all of this time,
I have been on Antibiotics a couple of times, for the crud., and etc.,
And, I can tell you that I WAS better whilst I was taking them.
So, this makes no sense to me, when they say that this is a viral condition,
don't you think ?
I AM going to ask my Doctor about this, the next time I see him. I had thought about the cordisone too !
Isn't it a shame that we have to ask our Doctors what WE think they should do, and what We want..... ?
THANKS, Carol, I am so glad we have this board on here too !
Let me hear from you........, and THANKS for listening......., Good luck to You !
Back to bed......,
Glad you got my post, Geegee. Pain, swelling AND fever? That pretty much clinches a diagnosis of infection. Any MD telling you that there is nothing to help is crazy UNLESS he/she has done cultures to verify that the infection is viral and not bacterial. I would find a doc that specializes in autoimmune disease, like a Rheumatologist. We should never have to hear "there is nothing we can do" unless we are in the end stages of terminal cancer! How frustrating....I know all about the soft food diet. Enough to make you barf, huh? A couple years ago degenerative joint disease attacked my TMJs and left me jointless. I would have given just about anything for a big old steak! Have you tried hot packing your face several times a day? It may help open up a duct and let some of that infection drain out. Have you had a thourough work up? I have heard that other autoimmune diseases have been mis-diagnosed as epstine barr. The chronic fatiuge is a common thread. I hope you are feeling better....off to bed for you, but off to work for me Carol
Carol888: Welcome to our fourm and we hope to see you posting often. I'm very sorry to hear that you have both Lupus and Sjogren's that has to be rough! I consider myself lucky in the fact that I have Primary Sjogren's and not Secondary! Its good to finally share this syndrom with others that have it. I'm 27 yrs old not the typical age for Sjogren's but I'm sure as time goes on and doctors become more aware of this syndrom we will find younger and younger people with it.
So sorry your in so much pain, I wish there was something I could suggest to help you. Thankfully for me I have not delt with what your going threw. All I can say is please please please find a new doctor for a 2nd opinion!! If I was in the pain that your in and my doctor said, "sorry there is nothing I can do for you" I would be opening my health plan book (these days go on line to their site) and look for a new doctor that I could go see.
I really think that's the best advice I could give you do your own research and get a 2nd opinon!
Hi Milk...Thanks for your welcome! I will be checking in here often. I was diagnosed with Lupus when I was 15 and the Sjogrens was tacked on for my added enjoyment at about 26. I was a Paramedic at the time of my Sjogrens diagnosis, but I was baffled! I had never heard of such a disease. Even now at 38 and in a different medical profession, I very rarely come across it. I am lucky that my Lupus is not usually serious and all Sjogrens adds is dry mouth, eyes and GI problems. I am glad they added this site. It sure helps sharing information with others who understand. You gave good advise to Geegee about MDs, too. I have no idea what a infectious disease doc is doing, trying to deal with autoimmune disease issues. I sure wouldn't go to a podiatrist for a brain tumor, and any decent doc will acknowledge when he is out of his/her element. Nice to "meet" you both....Carol
I suffered from swollen parotid gland on the right side in the early 80's, I didn't even know what they were and my doctor sent me to a ear nose and throat doctor never would have guessed that one. Anyway they checked for stones and infection and it was fiborous and the pain was so bad when I ate so they decided to remove it. This is a 6 hour surgery and two doctors had to do it because it is such a operation that they do it under a microscope the whole time. You also have your facial nerve that runs between the gland so they have to go slow to make sure they don't damage the nerve. But long story short everything came out fine but I do get some redness and sweating on the cheek from the nerve that attached to the skin. I have crohn's also. Take care geifer
WOW you've been dealing with alot for a long time. Are you taking any kinds of meds for the Lupus and Sjogren's? I'm 27yrs old, I think as time gose on we will find younger and younger people with Sjogren's. I think I've had it for years now and just didn't know...what made it come to light was when I kept getting pink eye and they over night my cornea's dried up to the point I couldn't wear contacts and my eyes were KILLING me and I couldn't keep them open. Lucky for me I was told about some GREAT doctors and I went on my way to them and I get upset I"m still in my glasses but I should be happy that I can see with out problems and that my cornea's are not half as bad as they used to be.
WOW you seemed to have gone threw quite the ordeal. It's good that you have made your way here to help others deal with what you have gone threw. From what I understand crohn's is nothing easy to deal with. Do you also have Sjogren's?
Hi, Well now that I know what sjogren's is and what the sympthoms are I think it is time to say something to my doctor. I have a few specialist and I don't think they share info on me very much. But I do have an appointment with my GI doctor Wed and I will ask him what he thinks. Take care all and stay safe geifer
Sorry it has taken me so long to answer. My husband had his prostate removed and I have been busy . I didn't ask my GI doctor I am going to my dentist in another week and see if he thinks it is in the glands. I have a lump on the lower part of my cheek but it is the side that they took out the gland. If he is not sure I will go to my PC doctor. I also need to make an eye doctor exam and ask him about the dry eyes. Take care geifer
It's good to hear from you. WOW ! You have been busy ! Nothing like a
sick Hubby. But I bet you are a great nurse.lol.
I am really interested in this surgery BC my Father-in-Law will be having it
soon ! Please keep me posted, okay ?
You said you may go to your Doctor. I hope you do go,
and I hope you get a good report.
One thing I have learned about ' Sjogren's ', is to reasearch it and check it
out for myself. You can do a search on your computer.
I found one that had photos, and I said, ' OMG, this looks like ME ! '
Then, on top of everything else, I have to contend with this chronic
Epstein Barr Virus.
I am of the opinion that chronic fatigue goes along with all of this !
Actually, I am having a rough week. If I didn't have a temp., I think I would
at least be about to function.
I just have to make myself get up and GO, when I have to !
So, I am not doing much of anything.
Thanks for listening, and let me know if I can help in any way..........,
' I wish you well and happy days ! '
You take care of You and Yours......, and let us hear from you.
Hi Gee Gee,
I had my peroided gland removed on the right side in I think it was 1984. I would eat and the whole side of my face would swell up and it was very painful. I don't know if there is any new way of removing it or not because it was so long ago. I know we asked the Ear,nose and throat doctor if he has done many because I didn't want to be the first one his has done this surgery on. He had done quite a few so I really trusted him because the facial nerve runs between the top and bottem parotid gland. And I remember them waking me up after the surgery and asking me to smile to see if the nerve was saved. I was only in my early thirtys at the time . I hope your father in law does well the recovery is pretty good and doesn't take too long. I also have low thyroid and my doctor justed up my synthroid because I was getting tired alot. So he did my blood work and it was low so he uped my meds, I have fibromylgia besides the crohn's. I was doing well until I hit my 30's then all h... broke loose. I am 51 and I have been married 31 years we have two sons a daughter in law and two granddaughters 5 and 19 months. My husband is recovering from prostate cancer and he is going back to work in three weeks. I notice when I get overly stress or tired I get more symptoms . What kind of doctor is doing your father in laws surgery? I wanted to ask my dentist first but I take really good care of my teeth so I think it might be my gland. I found out they couldn't remove the whole thing and like I said it is a very long operation. Take care and it was nice chatting with you geifer