Hello

[ToniiiMack]

Hello everyone, I am a newbie on this board and hoping to gain lots of incite into Sjogrens and wisdom from all who have experience. 
I am not positive I have Sjogrens but my doctor dropped that bombshell on me the other day and told me to research it.  That's how I found this forum.  I have called his office and told them I want blood work and a lip biopsy as I want to KNOW do I have it or not.  My salivary glands are swollen and my dry blurry eyes drive me crazy. I have pain in different places at different times, pretty sure it's Fibro.  This has been for years.  It seems I have been going to different doctors with each treating something different.  I thought my eyes were acting up because I had cataract surgery a few years ago but they have been getting worse and worse.  I use Soothe XP drops 5-8 times a day.  I have an appt with an Opthamologist who treats this but not until Nov. 8th. I am 74 yrs old and feel like everything is starting to make sense now if I am diagnosed with this.  I have a lot of fatigue and pain.  Thank you so much for providing this forum!
Toni

[meirish]

Well, it is good that you have found a doctor that thinks ahead to Sjogrens. Be aware that Sjogrens can cause fatigue and body and joint aches also. It is also possible that blood work and lip biopsy will be negative. I had symptoms for around 40 years before I got diagnosed. You still need to be treated for your symptoms. You may want to find a eye doc who will treat your eye issues more aggressively.

Don't give up if testing is negative just hang in there and make sure to address any lung issues or Gastrointestinal issues plus neuropathy issues. There are times people with Sjogrens need to see neurologist also for numbness, nerve pain etc. Check out all the problems of Sjogrens during your research as dry eyes and dry mouth are not the only problems. Take care and keep looking on this site. Do a search for all your issues and this site will have lots of posts to read. Good luck. meirish

[deeindiana]

Welcome Toniimack! This is a wonderful place to learn, compare symptoms, ask question and get support. I'm sorry that you are dealing with SjS but am glad you are here with us.
Dee

[Joe S.]

Welcome. I do not check in much any more since I killed the borriella Bordorffi in my system and one other bacteria. My sjogrens and arthritis do not show up on my blood work. My mental fog is gone, no more random roaming pain, and no weather pain. I still have the damage that Sjogrens and arthritis reaped on my body. I hope that you can find something that will help you.

[Judie P]

Hi, and welcome.  I have what is called Primary Sjogren's, as I don't have any secondary autoimmune disease that is considered secondary.  I do have fibromyalgia.  Most of my Sjogren's landed in the digestive system.  I was checked out for intrinsic factor and I am compromised there.  I "gained" pernicious anemia because my digestive system will not absorb Vitamin B12.  This is pretty common for someone with Sjogren's.  I am also low on Vitamin D at this time.  I have been battling that one for a while.  When I was getting Vitamin B12 shots, I felt great.  Now that it has dropped again from 1,200 to 384 (200 - 914 is normal), I am beginning to feel the effects of lower Vitamin B12 and digestive issues.  In fact, I just went through a month of IBS and I know I had that when I was at 192 in my Vitamin B12.  However, my doc will not give me shots again.  He wants me to try pills, but that does not seems to work.  So I am trying liquid B12 and D in hopes that it kicks it up again before I have major cervical surgery in December.

I would not only have the regular tests done (I scored off the charts with SSA and my ANA was off, too), but I would have him check for Vitamin B12 and D.  If you have any questions about digestive issues that might come up with Sjogren's let me know.  I am not a doctor, but I have gone through enough of those symptoms to empathize with you.

[meirish]

Interesting to me that your doc won't give the shots for the B12 issues. Sjogrens does a job on the stomach and colon and makes digestion of food and meds more difficult for most people. It is not unusual for people with celiac and sjogrens to have absorption problems that linger on and on and affect our absorption of our oral medications. Good luck. meirish

[Carolina]

Welcome Toniii,

My "Sjogren's" doesn't show up on tests for autoimmune conditions because my  Immune system doesn't use autoantibodies to attack my organs and systems.  Instead the attacks are from cytokines (another protein) of the immune system).

Immune disorders cause so many symptoms and problems.  I would suggest that seeing an Immunologist might be best.

Best wishes,

elained (aka Carolina)