Recently diagnosed, and have a question

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Still Jake'sMom
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 6/2/2016 8:07 AM (GMT -6)   
I haven't been on the boards for a while, and have never posted on this particular forum.

I was dx with Sjogrens, and I'm still in the process of learning if it's primary or secondary. Lupus has been on the table for some time now, but still no diagnosis.

I have had mouth and tongue ulcers for a while, but last night my tongue swelled so much that I thought I might have to visit the ER. It is better, but still very swollen, and I have multiple sores. Is this a sjogrens thing? I went over my diet yesterday, and I'm fairly sure it isn't an allergic reaction.

Any shared experiences or advice is appreciated.

Stacey

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1637
   Posted 6/3/2016 1:19 PM (GMT -6)   
Welcome to this forum Still Jake's Mom. I think I remember you from the Lupus forum. I have Lupus with secondary Sjogren's. If Sjogren's Syndrome is the only autoimmune disease you have it is called Primary.

I have an interesting story about my swollen tongue. I went to an oral pathologist because my tongue was swollen and I had a few ulcers in my mouth and one on my tongue. My tongue was so swollen that it also had ridges along the front. She told me that she herself had this very problem and she called it scalloped tongue. It comes from being so stressed that you push your tongue up against your teeth. The tongue is a very strong muscle so it easily presses hard making it look swollen. She said it happened to her in college. I was stressed about my lupus and the pain (of course). She told me the "secret" to relieve this: open your teeth while keeping your lips closed. Every time you feel your tongue against your teeth repeat to yourself, "open teeth. open teeth." It works! She also injected my tongue ulcer with prednisone. It cured the ulcer, but the injection hurt like a son of a dog.

I'm very sorry you still don't have a diagnosis, but drop by anytime. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Still Jake'sMom
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 6/5/2016 7:56 PM (GMT -6)   
Thanks. It is possible that I did do it in my sleep, because I was very stressed at the time. In addition to being very swollen though, it felt burned even though I did not burn it. Primary says it could be my anemia causing it, so I'm going in for more blood work.

I have Raynauds and Sjogrens, along with osteoarthritis.

I have kidney issues now too, so we are watching that. My primary has sent me to 2 rhumies, and neither will say Lupus, because I've only had 2 positive ANA's, but high normal inflammation, and other tests. We will see.

My neuro did rule out MS after much testing. Great news.

Stacey

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1637
   Posted 6/6/2016 3:13 AM (GMT -6)   
Hi Stacy. Just a quick note. Thrush causes a burning tongue. Usually if you have thrush you develop a whitish-yellow coat on your tongue, but sometimes your tongue will just have cracks and a red color. (Sjogren's is notorious for this.) Your doc can prescribe what is commonly known as Magic Mouthwash. I currently have some in my fridge. It numbs your tongue and is very soothing. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry
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