I might have Sjogren's.

[LovelyButParched]

Hi all! My name is Shaunna and I am 22 years old. After several years of not feeling so hot I am finally looking at a possible diagnosis of sjogren's! I am so happy to finally have something to blame all of my crazy symptoms on! Some of the things I have been experiencing are: intense stomach pain, acid reflex, reoccurring stomach upset, sleep problems, sores in the back of mouth, joint pain, ankle swelling after being on my feet all day, unexplained hypoglycemia, dry eyes, dry mouth, and dry *cough cough* "other" areas.

I spent the last couple years visiting GP doctors, endocrinologist, neurologist and just now got in to see a pulmonologist and rheumatologist. In the past I have had some problems with Dr.s not taking me seriously or even insinuating that I am exaggerating my symptoms. The standard "you?re a busy college student, you have a lot on your plate, do you ever feel nervous or anxious? We can try out some anxiety medicine and I bet you will feel better." was also thrown at me quite a few times. Slowly but surely I have found a few of the right Dr's and with some plain old luck, my Neurologist gave me a blood test for Sjogren's! She also informed me that I have the narcolepsy gene. That one is still weird to say! Anyway, she referred me to a pulmonologist and a Rheumatologist.

The pulmonologist went really well. I did two sleep studies but my results aren?t conclusive for narcolepsy. But I am definitely sleepy. He put me on a trial of the medicine to see if I respond. If I do then I have a mild case of narcolepsy and if I don?t we will try something else.

The rheumatologist is the one I have questions about. Even though I had done a little research before I went in, I pretended that I didn?t really know anything about Sjogren?s. I just told him all of my symptoms and didn?t make any speculation. I was so happy to finally be looking at a serious diagnosis that I didn?t want to start off on the wrong foot with the Dr. He asked me a couple questions about how I react to cold (I think he was thinking about Raynaud?s?). Then he said I appear to have some symptoms of Sjogren?s but my blood tests aren?t positive in everything he would typically see in a Sjogren?s patient. He asked me if I wanted anything to help with me dry mouth. I said no. He said okay come back in three months and we will do another blood test. And that?s it.

Should I be a little wary about my rheumatologist? I am going to give him a chance and I am going back in September but I am just really afraid of being jacked around again. Did you all have a similar initial meeting with your Rheumatologists? I know there are a few other tests that can help determine a SS diagnosis and he did not even mention them. Is it because he thinks that I have it and doesn?t want to put me through the tests. Or is it because he thinks I am exaggerating and is just blowing me off? I am just not sure what to believe at this point. I really REALLY appreciate any and all feedback that you all are willing to give. I feel kind of alone in this sometimes so I?m really glad I found this site!

[Tran1217]

Hi!

Try not to think so much until you get your results and diagnoses from your dr. I know its hard not to think about it... ive been there. Yes there are lab tests that they could do to determine if you have SS. Like the ANA, SS-A & SS-B antibody test. They can also further their testing with the eye test and even a lip biopsy. But that's good that you are being referred to all these drs to figure out whats wrong.

It seems like the now a days people are getting diagnosed much younger. I'm 30 and I was diagnosed 4 years ago. I only did the blood test and mine came back all positive. They even tested for my rheumatoid factor and my results was sky rocket high. I don't have the extreme like joint pain (praying that doesn't come soon) but I realize I do have dry eyes and dry mouth. I do get very fatigue and sometimes even feel stiff. One thing I also realize about too is that my memory was getting pretty bad. I feel like I was always having brainfog. Makes sense now why I had such a hard time concentrating and focusing while in school years ago. 5 months ago the dr started me on Plaquenil and its been like a miracle pill for me. I'm less fatigure, less stiff and felt like I can focus and concentrate more on the things that I do.

I hope you get your answers soon! Hang in there!

Tran1217