Newbie - do these symptoms sound sjogrenish?! Please help!

[Iluvrain]

Hi

I have been having a terrible time with pain and infection in my cheek. Ongoing for a year and getting little help. What we have found is that antibiotics help and at one point my doctor did see pus coming out of what she thought was my parotid duct. She put me on doxy. Then an ent did a saliendoscopy. He said he saw no infection, but the duct was extemely small, one of the smallest he had ever seen. He dilated it. Now the symptoms are back..and if i go off abx, i will get a very bad taste pouring into my cheek and if i begin to chew it is unbelievable pain...but the sharp pain is all in my jaw, teeth, side of face.

So i go to ent at university hospital. She orders mri with contrast. The parotid on left showed likely chronic parotitis...edema and the gland is atrophied with ectactic duct. The ent said the gland was likely shutting down, but otherwise it appeared " fine" and all other glands appeared fine. She suggested a repeat saliendoscopy and a lip biopsy to check for sjogrens. But she states, i am not finding anything specific. One of the oral surgeons i saw swears i have sjorgrens due to the dry mouth and thick saliva. I did not have the ssa antibodies and all rheum bloodwork is normal.

My concern is that i really feel that this duct is closing and keeps getting backed up and infected. If one saliendosccopy didnt last...why would the next one? Im wondering if i should pursue more the  sjogrens testing. I do also have very dry eyes..no tests yet. Tons of dental problems. But noone really seems to pinpoint anything. The oral people all say glandular...then i get to ent and they dont see much. Meanwhile...i am stuck on continual abx to keep infection from coming out of my cheek. The ent said it didnt mean infection, but that i could be tasting just whatever the gland is spewing out. Ut i know it is more. Noone can ever get anything to come out...it does not produce saliva. But she said usually with sjogrens, more than one gland is affected.

I also have been tested positive for igm antibodies to lyme. So we are trying to sort out what really is primary problem here. During the worst episodes of cheek pain, i also getting burning pain in my neck sort of behind my ear. My ear stays very hot and red and sometimes the side of my face. I also have neuropathy...which i found gets better off of gluten, fyi! I am extremely gluten intolerant.

Thanks for your advice. Im wondering if what i am describing could be sjogrens and if i should pursue that lip biopsy? Also, do any of you get referred pain in the jaw with parotid issues?  Can they do it in the office? With my current lyme i dont really want to do any surgeries right now. Thanks for your help. I also dont want to get married to a lyme diagnosis until i have settled this parotid issue. The lyme experts say it is it related.

PS. I am 40 year old female...with two young beautiful daughters

[finallyadx]

Although us sjogren folks do get parotid gland and salivary gland issues, we often also have dry eyes, dry mouth, neuropathy, digestive issues, swollen and painful joints, some of us have anemia and lung and kindey problems and dental problems as well.

You can test negative for sjogrens but some rheumies will treat if you have four or more symptoms of sjogrens, it depends on the rheumy and their practices and policies or the policies of the hospital that they practice on behalf of.  Some want a positive schimer's eye test and a positive lip biopsy along with symptoms or a positive SSA/SSB test. 

It sounds like you have a combination of lyme's disease and sjogrens symptoms, but only a medical professional can tell you for sure.  Having a lip biopsy is a good thing in the sense that it will hopefully give a positive or negative for sjogrens. 

I am sorry to hear that you are having so many issues right now.  It does sound, however, that you are in good hands and hopefully they can get to the bottom of your health related issues and begin treatment.

Keep us posted.  You will find if you are diagnosed with sjogrens that this group is an excellent source of encouragement, information and support.

Good luck.

[LittleBlue]

My first signs was just a continuing enlarged parotid gland on ONE side, and It did develop into a bad infection with pus once, but mostly just swelled regularly and I had a horrible salty taste in my mouth from the gland. My rheumatologist said  blood tests showed inflammation in my body. Had to have a lip biopsy which confirmed it was actual sjogrens. My rheumy was great and pursued my diagnosis and treatment, but the initial ENT who did the dye/scan thing and checked my glands first was horrible and useless. He even lied and said my blood tests didnt show inflammation in my body, which my rheumy confirmed afterwards but they had. The ENT had said he couldnt see the point of a lip biopsy as it probably wont show anything, based on the dye/scan. I walked away and wouldnt have nothing to do with him again, in fact he made me cry. It was the rheumatologist that went on and set up a biopsy (different ent) and  I also then had a schrimer test which was positive.  If It had been up  to the ENT, who thought there was nothing wrong, and made me feel awful about my weight, I would have never got the diagnosis and treatment as quickly as I did. Eventually over time my hands also got very painful, and then I got more joint/muscle pain and rashes and mouth ulcers. I also lost a number of teeth. This has happened over a slow course of a couple of years since my parotid gland started swelling. To be honest I didnt really find hardly any discomfort with my eyes at the start. Now I have also had digestive motility problems and developed raynauds. For me it was the lip biopsy that confirmed my diagnosis and treatment. That and having a really good rheumatologist who was very conscientious and strives for those in his care. If you have it its better that you get a diagnosis and hence medication as soon as possible. Good luck

[Iluvrain]

Thank you...my last sentence was meant to say that the lyme doc does NOT think my gland problem is related to lyme. So i think i have separate issues. How bad is a lip biopsy? Is it in the office usually? And would you suggest an oral surgeon or an ent?

Did the treatment help you with the salty taste in your mouth?  That is exactly how i describe it...sour and salty.

[Iluvrain]

I also have raynauds and circulation problems in my feet...they freeze! But again, gluten free helped that tremendously!

[Joe S.]

welcome Iluvrain

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[Iluvrain]

What are the main treatments for sjogrens and how do they help you...i have dry mouth and eyes.

[susanep]

Welcome, and sorry to hear all you are going through. You do have symptoms of sjogren's, but I hope  you do find out more soon.

Most are put on the drug plaquenil to see if it helps them. I have been taking it for several years now. Then if they need eye drops, and aids for the dry mouth, skin, etc. There is help also for pain many experience, and rest is a given.

You have come to a wonderful board of caring people.

susanep