Would like to hear from people with Sjogrens

Hi - I was never given a definite dx of Sjogren's, but my Schirmer's (sp?) eye test showed severe dryness, and I have been dxd with several other autoimmune diseases. Is there a specific test for Sjogren's? I use Restasis and have had my tear ducts plugged. My eyes are better since the tear ducts were plugged, but I still have to use drops frequently. Fatigue is my biggest complaint. Anything I do tires me out to the point that I have to take a nap. It's very frustrating. I'm wondering if there is anything I could take to improve my stamina. Currently, I take Imuran. It may control some symptoms, but I feel terrible and am very limited in what I can do.

I have Sjogerns also. I had horrible joint pain at the beginning of my diagnosis (about a year ago) but it has subsided. I did the autoimmune protocol diet for 6-7 months and it helped tremendously. I also started a “high powered” multi vitamin. I’ve been diagnosed as prediabetic so lately have really been watching the carbs. And it’s seems to be affecting my energy levels. As well as my cognitive problems and tinnitus, making all of them better. Ive been reading about how insulin may be affecting more than just your blood glucose. Maybe you should have your insulin checked? I haven’t had mine checked but plan to.

Hi PowerofPositive:
Just checking in to see how you are? I am pretty much the same. You know, everyday can be a struggle. So much garbage. We tried so hard to be perfectionists trying to accomplish and end goal and always there is an incompetent or road block in our way. What has happened to the integrity of our society. Do you remember when people cared and listened to you and they actually relayed accurate information? Oh, the good old days and how we long for them. I read these posts and from the nuances I am picking up we are a group of intelligent people here. No baloney, just women possibly some men, looking for help that does n't seem to come. Yes, with a lot of autoimmune diseases comes depression, why I don't know. I have read and I wish I could quote from it but the brain fog takes over ----- a lot--- that the brain actually suffers from inflammation as well. They did a study and they used fairly high doses of steroids that appeared to relieve the symptoms of cognitive impairment. In my humble, non medical opinion, even though I read so much I think I could have taught these doctors a thing or two. I believe, there would have to be a depression in the mix. Any disorder that can potentially hit the brain and cause cognitive difficulties which slows our thinking would have to bring on episodes of depression. Take a look at Alzheimers patients. Another lovely disease process. This is known to cause depression. I have watched enough family members with that. Forgive me if I sound bold, this has always been my personality. There were times which I could not believe, I actually stated, to one doctor, that he was lacking in education as I was walking out his door and I watched his mouth drop. I was not always a bold personality until I realized if I did not speak my mind nothing would change for me or anyone else seeking the truth. I believe docs have a speech that they use on the patients that they find trying so they can go on to something that is easier and less taxing for them to accomplish. It is though they look for instant gratification in their practice. Pick the easy stuff as it is quick and easy. Just dump the difficult and hopefully they won't come back. You know, almost like a sales pitch. I know for a fact not all doctors are like that however there is a large percentage. This disease and others are starting to receive respect. A very large Metropolitan Hospital has a building specifically for Sjogrens patients staffed with Rheumatologists. Opthamologists. Neurologists,Oncologists and many other specialists to treat and cornfirm this diagnosis. I know this as I called them. I can't state who they are as this I am sure would be a conflict of interest on this site. America is finally picking up where the Asian Countries have been studying and developing new drugs for this disorder as well as Lupus, R/A. America is not the trail blazer of this disease. Two Asian doctors diagnosed me. One doc of Indian descent and one from China and they knew all about it. Hugs to you. Dee

Hi
I am still searching for a diagnosis. I have dry eyes and often thirsty but blood work negative for sjogrens. I can not find a place or doctor to really help me. I am in New York, on long island. Can you please tell me which city has the sjogrens hospital? Please help me. Thanks

@mialola Here is a list of hospitals with good rheumatology departments. There are 2 in NYC and you may need to travel.
https://health.usnews.com/best-hospitals/rankings/rheumatology
You could also ask for names of rheumatologists on Long Island.
Did the doctor who diagnosed you not offer any treatment or referrals?

@mialola Here is a list of hospitals with good rheumatology departments. There are 2 in NYC and you may need to travel.
https://health.usnews.com/best-hospitals/rankings/rheumatology
You could also ask for names of rheumatologists on Long Island.
Did the doctor who diagnosed you not offer any treatment or referrals?

Hi
I am still searching for a diagnosis. I have dry eyes and often thirsty but blood work negative for sjogrens. I can not find a place or doctor to really help me. I am in New York, on long island. Can you please tell me which city has the sjogrens hospital? Please help me. Thanks

@mialola You can just try calling each hospital and ask if they have someone who specializes in sjogrens? That’s what my husband had to do when I was admitted 5 years ago. No one in my area knew what was wrong so my husband called the close-by university hospital and asked for an appointment for me. The persons who answer the phone are real experts in helping people. Will you try calling tomorrow? I really want you to get some help and answers