Help me figure out if this is Sjogrens????

[Stormys101]

I am 36 Female. I would consider myself healthy my whole life with the exception of year long allergies mostly hay fever type symptoms and the occasional sinus infection. However the last couple of years I would get throat infections...not strep but my tonsils would break out with white spots and my throat would get really soar. The doctors just said I was having sever allergies and change my prescriptions. I would also have bouts of lethargy they would usually only last a couple of days maybe a week at most nothing to severe just feeling more tired than usual... I thought it was allergies taking their toll on me!
3 months ago ....FIVE days after my first surgery (knee ortho) nothing major...I woke up with my left eye swollen and the eye lid appeared pink/red... This swelling was not going away! My face was tingling ...by the eye... Eyebrow and cheek area... Tingling and kind of itchy... It felt like something was wrong with a nerve in my face on the left side where the eye was swollen. I ended up going to multiple doctors and the ER several times! I heard everything from Bells Palsy/ allergic reaction/ sinus infection... Blah blah. I took three rounds of antibiotics and then Prednisone... The prednisone reduced the swelling almost immediately... However after I was done or when I would reduce the prednisone the swelling and weird facial tingling would come back.

I got sent to UCSF and they recommend a biopsy of the Lacrimal gland BC there appeared to be a growth in the Gland.

Biopsy came back negative for cancer but had scar tissue that is consistent with what they see in people who have Sjogrens?

My questions are do people usually have eye damage like this without noticing eye dryness? I don't think my eyes feel dry? Or my mouth?

Has anyone else experienced the facial sensation I have been having? Since I had the surgery and my eyes no longer swollen (they put a steroid into my lacrimal gland to prevent swelling) I no longer have the tingling.

For the last three months I have also been very latargic ... I wake up and two hours later need a nap...I have also been experiencing a slightly soar throat!

Any feed back or ideas would be great..
Thank you

[Joe S.]

I wss Dx'd when I asked the doctor, "Dry eyes, nose, mouth, skin, bum, what do you think it is?"

[Jasper]

Not all people with Sjogren's have dry eyes and dry mouth. Many people present with other symptoms before dry mouth and/or dry eyes. many people with Sjogren's present with neurological symptoms prior to having dry eyes and mouth.

Because Sjogren's can affect the tear glands and the Meibomian glands of the eyes, a person can have eye problems before they experience dryness. In addition, you may have some type of neuritis or neuralgia affecting your eye or the area around your eye.

In addition, people often don't realize their mouth is dry unless they really stop and think about it. Do you drink water often? Do you need to drink water at night? Can you eat dry food without drinking fluid? Does food every get stuck in your throat or esophagus? Does your mouth get dry when talking? Is your throat scratchy? Do you have a dry cough?  These are Rhetorical questions. People with Sjogren's may have these symptoms which they may not realize are symptoms of Sjogren's.

Fatigue is a symptom of Sjogren's.

If UCSF felt that your biopsy showed scarring consistent with Sjogren's, did they follow up on it by sending you for a salivary gland biopsy , doing lab work to test for Autoimmune Diseases and antibodies, sending you to a Rheumatologist?

If they did not follow up on their findings, then it would be wise to see a Rheumatologist and discuss your symptoms with the Rheumatologist. Try to find a Rheumatologist who is familiar with Sjogren's Disease.

[Stormys101]

I am super frustrated BC the UCSF optometrist just called back and said Rheumatologist called and before they will see me they want me to go get a biopsy of my mouth done! My eye lid isn't even healed yet and these butchers want another piece of my body? Why can't I meet the doctor first to discuss stuff? I don't think I am showing some major signs of this disease yet? My mouth isn't dry! And neither are my eyes? Am I being unreasonable for saying I want to discuss this first? I am being sent everywhere and cut into with little to no reasons or explanation for me! Is this normal?

[Stormys101]

And thank you for the reply 

[Joe S.]

You may need to find another medical team. Ask questions before you commit. Who, why, why, why, how, and WHAT?

[irish]

You are not having the normal dryness that is described in the literature, but not everyone goes by the book and most of the people with autoimmune disease never go by the book.

With all the symptoms you are mentioning and I would go ahead and have the lip biopsy. The symptoms you describe are debilitating and if it was me I would want to know what the heck is going on. I am a retired RN and I had a lot of really weird stuff for many years and the stuff began to get hazardous to my health. My rheumy told me to tell my ENT to do a lip biopsy. Ent told me I didn't have Sjogrens, but I told him "do it" and he did and 4 days later the results of the biopsy said I had Sjogrens.

I had ear involvement and ended up losing all the hearing in my right ear.That was just one of my problems and that happened about 5 years prior to Sjogrens diagnosis. Be sure to have an ENT who knows what he is doing do the biopsy. It can be done in the office and takes some novacaine and when the lip is numb the doc slices off a bit of tissue in order to count the salivary glands in the specimen and assess the inflammation in these glands. You want a doctor who does this procedure fairly often.

Normally I am not apt to tell people to do the biopsy too soon, however, your symptoms are severe enough that you would benefit by doing this. It may come up negative, but, the fact is you probably need to have some type of treatment to keep you stable. If you are improving on steroids you are most likely suffering from some type of inflammatory condition.

Also, has the ophthalmologist checked you for iritis or other autoimmune eye issues? Keep looking for diagnosis as you need to get your body stabilized. Good luck. Irish

[Stormys101]

Thank you,

I will be scheduling the lip biopsy tomorrow. I have been reading more about Sjogrens and I seem to be having more symptoms the more I look into it. I have been struggling with more nerve symptoms than dryness but the nerve problems are really bothering me! I was just feeling agrivated earlier because I had a biopsy of my left lacrimal gland BC the doctors thought I had lacrimal lymphoma so I did this surgery and then come to find out it's not cancer it maybe Sjogrens made me feel upset BC my eye hurts and is still healing and they want another biopsy plus they were wrong! LOL At least I am getting closer to an answer and I have doctors who are trying to find the problem rather than giving me allergy meds an shoving me out the door! Thank you guys for giving good advice and helping me feel like I am not alone or on the wrong path... I will be getting more testing done and should probably get use to this idea and get use to looking for answers myself and asking questions instead of being quite!

[Jasper]

Stormy .....

I agree that it is good idea to go ahead with the lip biopsy (salivary gland biopsy). The main thing is to be sure the doctor who does the lip biopsy is very experienced in doing lip biopsies and also that the biopsy is sent to a lab with a pathologist who is experienced in reading lip biopsies. Ifyou have it done at UCSF, they wil have experienced ENTs and pathologists.

Here are a couple of links to good articles on Sjogren's neurological manifestations:

http://www.sjogrensforum.com/from-the-doctor/neuropathy-in-sjs-review-by-julius-birnbaum-2010/

http://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/


And here is a youtube video of Dr. Julius Birnbaum speaking. He covers Sjogren's in the last half of the youtube video (at 19 min.).

https://www.youtube.com/watch?v=xs1QkNBlpMs

[trejonina]

Hi,when I was in my 20''s and 30"s I would get throat and respiratory infections and the fatigue. Now the worst symptoms for me are the fatigue and brain fog, since I controlled my arthritis with 100 mg minocyclene first, and then  took  100 mg doxyciclene, both taken on alternate days.

[bloodless]

I hope the lip biopsy goes well and clear results for you. It's really exasperating chasing down a diagnosis sometimes. You'll find most of us here have had to go through similar experiences of frustration trying to find out what is going on with our bodies.

[Wal]

I started presenting with neurological symptoms at age 28. It lasted for a year and has come and gone since. This year I started having the dryness of eyes nose and mouth. I'm assuming it's all related. No one could figure out the cause of my neurological symptoms. I would have all the SS bloodwork done for sure. A lip biopsy if you're up for it. I'm putting that off. Also see a rheumatologist. I'm planning on seeing one in the next month. Trying to get a referral now. It sucks not having a diagnosis for sure!

[irish]

It is not uncommon to have the neurological symptoms present first. There are a certain amount of persons who do have the neurological symptoms first and I have read the percentages---it is surprising at how many there are.

I would also advise you to have a neuro consult and assessment to see just where you are at. I have had one because I have myasthenia gravis and Sjogrens and several other autoimmune diseases. She has addressed my neuro issues that are not related to the myasthenia plus done MRI of brain a couple of times to keep watch for brain issues that can show up with autoimmune disease. She is a very important part of my medical team. Good luck. Irish