I'm seeing a new dr Monday & wanna be tested for sjogrens. What kind of test is it? I've had blood work done a few times to check for "autoimmune disorders". Is that the same test or is it a different test for sjogrens? I know I have some symptoms. But you know how that is. It'll likely be negative. But I like to be tested for everything just in case... So I figured you were of course the best person to ask about this..
I'm seeing a new dr Monday & wanna be tested for sjogrens. What kind of test is it? I've had blood work done a few times to check for "autoimmune disorders". Is that the same test or is it a different test for sjogrens? I know I have some symptoms. But you know how that is. It'll likely be negative. But I like to be tested for everything just in case... So I figured you were of course the best person to ask about this..
hi tori,
it's a simple blood test. well simple for us, giggle. work for the person stuck evaluating our blood. remember to tell your doctor not ask. you tell them you want it for your peace of mind. being able to rule out something always feels good. i'm hoping you don't have it.
peace,
blue
Thank You I read there are biopsies... But blood work should be good enough right?
One thing that got my attention is burning eyes... Thus normal for me & had it for such a long time. But my eyes usually water too much. They get pretty dry sometimes. I read that watery eyes with sjogrens is normal. That the tears don't have all the libricating ingredients which is why they'll still burn. Then dry sinus, head pressure, joint & muscle pain ect... So there are allot of symptoms that could be this... But they are also fibro symptoms which is why I blaim fibro for them lol
Anyhow, I'll feel better once the test is over with. I just know there is something else going on. My primary thinks I have something hormonal wrong & I agree.
Anyhow, Thank You again as usual
Tori, I hope your new doc visit goes well. blue is right, tell the dr what tests you want if it's something you feel is necessary for your peace of mind and possibly any answers to what is going on.
hi tori,
forget the biopsy bit. all that is needed is a blood test. i read all that too and asked my doc. he said why go thru hades when a blood test tells the same story. love answers like that. he said a biopsy is overkill and only when blood work is inconclusive, which is rare. his words not mine.
sending a big kiss to your toe. don't flip anyone off with it sis, giggle.
peace,
blue
Thank You!
You know how it is, you want to be tested & it has to be accurate lol
This Doctor I'm seeing, I'm not really sure if she's a Rhumetologist or not. I'm going to OSHU & seeing a doctor that treat only fibro. There is a Rhumetology Clinic & also a Fibro Clinic. I'm hoping she could test me do I don't have to make another appt with my other doctor...
Even if the blood tests for SS aren't positive, you should also see an ophthalmologist for your eyes as you can test negative for SS but still have the eye problems. Sjogrens can be secondary to other disorders(I have it secondary to RA).
The eye tests are pretty easy although they don't sound like it. The very watery eyes with pain and burning is what it is....makes people think it's allergies but that thin fluid makes the eyes worse. So they do a Schirmer Test where they but a dye in your eyes and then look at the cornea to see if it shows it being dry(looks like shattered glass when very dry) and they also do another where they put tiny strips of a special paper in the lower lids and have you wait for 10 minutes(or 5...I don't remember how long)and then they measure just how wet the paper has gotten in terms of millimeters. If it's 5mms. or less of soaking the paper, then you have dry eyes.
You can have dryness all over the place but it's your eyes that need the most care. I use Restasis drops and then use dry eye drops almost on an hourly basis when my eyes are bad, less when they are stable. My Sjogrens flares separately from my Ra. Wish I could just synchronize them so I could be bad all at once and then better at the same time...but auto-immune never does what you want it to.
But please see an ophthalmologist and get the eyes tested....don't risk your vision.
Hello,
The more I read on this the more I wonder... The facial swelling caused by the glands, edema, nasal pressure... Those are things I figured we're because of fibro. I have many symptoms of sjorgens but they could be anything... I've had dry or watery eyes for such a long time, I don't know when it started... Atleast 10 yrs. I've been tested for diabetes because I go through phases of always feeling so thirsty. For awhile there I carried a gallon jug of water everywhere & drank atleast one of those daily. It's not that bad these days though. But I carry water with me everywhere I go. For me my eyes sting but I'm so used to it. I hate that my eye liner runs so much. My eyes over water when I'm in the car or outside. But that's been the least of my problems lol Never really though about it till the other day. I did get my vision checked a few month ago. The eye dr looked at my eyes because i did tell her they can be really dry. She said my eyes are overly dry & gave me eye drops. But I think my husband took off with the drops because I didn't know what happend to them.
If it comes out negative I'll see about getting an appt with that kind of dr...
Yesterday I used Saline nose drops to see if it would help. A little while later my husband asked if I had been crying. I hadn't been... He said my eyes looked alittle puffy & looks like I had been crying... Maybe the salt in the saline did that? I have noticed I'm sensitive to salt. I have had edema issues for awhile now.
I do hope the test is negative. I know there is something else going on but I want it to be something curable. Don't we all huh... Which over the counter drops work best?
I couldn't decide about the lip biopsy. my meds are contributing to dryness, no doubt, but it predates the meds.
Started having a frog in my throat, and other stuff so I did the lip biopsy. It does take several months for the nerve pain from that little snip to go away, but I got a good feeling about knowing the answer. Then I moved on to trying to get a dr to work diagnosing another bothersome problem, and got answers on that Not happy to have another problem officially diagnosed, but it's important to know sometimes, because now I can try to protect myself from that.
You have to read the symptoms, and make your best informed decision, based on your gut. I have figured out two out of three this year. Not so bad.
hi tori,
i like systane. allergic to restasis. the eye doc can't diagnose you. any other of your docs can order the test. i have already had the cataract surgery and replaced the lens's in my eyes. also had all my teeth out so most of the scary junk i already did and it was not that scary. giggle. i have a perfect smile now.
i thought long and hard about the biopsies before electing to skip it.
with dry eye it's a good idea to use eye drops 4 times a day.
have fun at the docs today.
peace,
blue
Last edited by bluelakelady; 06-04-2012 at 08:01 AM.
Thank You I'm there now... Yikes about the lip test! Ouch!
Hopefully this will be helpful... I've seen many drs that were worthless so trying to not get my hopes too high...
Had friends over late last night, not much sleep & miserable... Ugh
I'll update you guys later
This dr is good. Talked allot, ran some exams. Lots of bloodwork. She wants me to do a sleep steady. I go back in 6 weeks. If everything comes back negative we figure out the next step then. She does think that my Fatigue is what's causing me so much more problems. Maybe a sleep steady will show something... She says that I've had the test to look for autoimmune disorders & it was negative. But she did notice how dry I am. Said my mouth is really dry (I brought my poweraid with me & had been drinking it. He said ingredients are good). She said my toughie was so dry you'd think I was running a 105 temperature... There is many tests that she ran I'd never hear of. Runing a growth hormone deficiency test again. Anyhow, she does think there is something else going on & has a game plan to figure out what it is so I'm on the right track!
Hi Tori, sounds like things are looking up for you. I just had a few minutes before being on the run again and was checking in on the boards. Glad to see you found a doc that may listen to you. Keep us posted.
Well I was feeling good, but if I may have a little vent here. My endo had upped my thyroid med and I was feeling so much better until this past 5 or 6 days when I was too hyper and even with all the muscle relaxers and ambien I could not fall asleep for hours. So I had to tell the doc and I suggested a dosage I thought would help. Her nurse called and she is lowering my dosage lower than when I went hypo. I am not happy and I told the nurse that and said I will be letting her know immediately when I hit bottom again, because this is not going to work. What annoys me is that I have to go through all the 'crap' again to get the 'crappy' blood test. The problem is when I test again in 6wks. I won't be hypo yet it takes longer than that for the levels to drop.
Sorry Tori didn't mean to hijack your thread. I have been really busy, but most of it was really great with those grandbabies. Of course you are like my DIL, you have the young ones and they aren't as cute sometimes to their parents.....giggle!
Glojer
The following user gives a hug of support to Glojer: mom477 (06-05-2012)
hi tori,
glad to hear you are getting some work ups done. sleep studies are fun. a night away from home and kids and hubby and critters. in all the tests being done is sjogrens one of them? just curious.
glojer, you know what works best for you so be the amazon warrior woman i know you are and tell doc you want one in 8 and 10 weeks also. actually with a low that low it should come up in about 3 weeks and continue to till it's too high or just right. giggle.
peace all,
blue
ps. so glad my child raising days are over. i cannot fathom how hard it must be. yea i can but it scares the hades out of me. giggle.
Glojer- Highjack all you want Gives us a chance to chat about other stuff which is always good! Maybe call your doctors office & have your doctor call you back? You can explain why you think it's too low & what dose you think would work best & why... Unfortunetly Thyroid is such a Pain to treat... You just can't afford to be hypo for 6 weeks or more... Not fair to you...
Yeah I love my kids but they are handfuls lol They have their disrespect moments & then think they did nothing wrong... They get early bedtimes, time outs, extra chores, ect allot lol. My oldest is going to outdoor school for 3 days. It's great for her but I'll hate it. She's my best helper! But 3 kids is easier than 4 lol
Blue- I don't think there was a sjorgens test... She said that the rest I recently had I test for autoimmune disorders was negative & that if I had sjorgens it would be positive... It doesn't seem very realiable too me... But I figure she knows more than I do... I will talk to my primary about it next time I see her...
I think this dr will keep trying till we figure it out... We're on the right path
Hi Tori, thanks for the suggestion for my doc. I actually email her on the computer thing they have for their practice. They send copies of my tests etc. over it and I can ask questions or let them know how a med is working etc. What I think I did however was get way to wordy in my email. I should have just told her I was too hyper and was going to lower my meds to 112mgs a day and I would test again in 3wks. unless she wanted to wait longer. Instead, I made a comparison to dosages I took before and dosages she had me on then and ask her what she thought about the dosage I wanted to take.....well....sort of like that. My fault, won't happen again. I forgot that docs hear or read the first thing and draw conclusions from there and don't listen or read any further.
Just spent the afternoon with the 9 and 3yr. olds and the 2 month old....Oh I can't believe that little bundle of snuggle and sweetness is already two months old. He stayed awake the whole time I was there, about 3hrs. Just catnapped and he smiles and giggles and coo's. The other two boys were busy outside spraying everything with the hose (3yr. old) and climbing trees (9yr.old). Probably won't see them for a week or more. Unless the 3yr. old doesn't wet his pants for 5 days. Then he gets to spend the night with us. Just him not his brother. He won't stop when he is playing outside to go to the potty. His mom even said, pee on a tree in the backyard, just don't go in your pants.
I know there are specific blood tests for other autoimmune diseases, just am not sure about sjogrens. If you trust this doc, go with her and see what she can do for you.
I read there are biopsies... But blood work should be good enough right?
