Anyone with Sjogren's Syndrome an identical twin?

[Shababy49]

Hi,

My twin sis has been dealing with numerous symptoms for years. She has been to so many docs trying to get a diagnosis, to no avail. Some of her symptoms are dry mouth, dry eyes, joint pain, gastrointestinal issues, neuropathy, tingling and pain in hands, feet and legs, blurred vision, gritty eyes, spots in front of eyes, pain in eyes, itching of skin and eyes, joints swelling for no reason, fatigue, hard to form words and swallow sometimes. The list goes on and on. She is also insulin dependent, Type I diabetes, which all her docs blame every symptom of hers on her diabetes.  

Well, I go to the same GP as her, which I was recently in for because of thrush, kidney and urinary tract infection. Dr. D drew a lot of labs and then had me come in to see her to go over the labs. She told me she thought I had Sjogren's Syndrome. She told me she ran blood work and mine came back positive for the autoimmune disease, Sjogren's. I don't have my labs so I'm not sure which ones she ran or which came back positive,  but now she wants me to see a rheumatologist in Seattle.

Luckily, I ask the question...Could this be what my twin has? She says, interesting, I will have to check and see if I've tested her for it. Uh, why couldn't they put 2 and 2 together for over 10 years? This GP we just started going to in the last year, so she's not to blame for years of misdiagnosis of my sis. Can my twin be negative on the blood work and still have Sjogren's? I have had a lot of the same symptoms as my twin (not as severe), but i don't have diabetes, so I guess that's why they looked for other things with me. Dr. D said she ran the test due to me having thrush at age 35 with nothing to cause it but dry mouth (not on any meds except hydros for pain). My twin is very ticked that it took me getting thrush to maybe get her a diagnosis after 10 years!


Now What? Tests? Symptoms? What do we have to look forward too....

I would love to hear of identical twins with Sjogren's.

Thanks,

Sha

[Jenny1017]

Hi I have Sjogrens as well as Lupus and Fibromyalgia. From my experience with all this: The main bloodwork is Anti-Ro/Anti La auto- antibodies(SSA, SSB). I am not a twin, but my sister has celiac another auto-immune disease. There's a website so try to google Sjogrens Syndrome Foundation. It has educational infomation about the disease.   I know how frustrating it is to get a diagnosis, believe me. I use over the counter eyes drops and if you have dry mouth its vital to keep hydrated. Good luck Jennifer  

[yellow3615]

I was just diagnosed this week with sjogren. The ways she diagnosed my was ruling out most of the big viruses, and lyme, then she ran a host of tests all related to the autoimmune diseases and the two that came back positive were ssa and ssb. Not everybody with sjogren's will test positive for both but i did. I don't have dry eyes, not sure about dry mouth but am always thirsty i think because of the prednizone. I have flairs of joint pain, headaches, chest tightness or pleurisy, I have had a rash during one of my fevers and chills. I have trouble concentrating and focusing.  I also have tingling sensations in my body. I have good days and bad days. Also the joint pain moves around not the same joints all the time could be anywhere on my body.

[Shababy49]

Im new to all of this so don't what know what to expect yet. They tested my SSA and SSB which were both positive. I think that's how she decided to send me rheumy.

Sha

[kat120GRN]

What kind of blood work do they do to confirm Sjogren's disease? I have a high TSH and meds have been raised but I also have problems which I reported to my doc of burning dry eyes, rough dry patches on both elbows, dry mouth, swelling fingers at night especially, joint pain everywhere.  The eye doc said I have "exceptionally dry eyes for someone my age" I'm in my early 40's. So in 6 weeks doc will retake my thyroid panel plus check for Sjogren's. What can I expect?