I have been diagnosed with this and I’m in pain most days and would like to have discussions.
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@suetex @eiffeljacques Here is a newsletter that you may find very helpful and informative:
Will you let me know if you learn something from it?
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Thank you I will let you know
I just had bloodwork repeated o Monday. Got results earlier today all negative. I can't believe it. The dry eye specialist I saw referred me to a rheumatologist for a lip biopsy. After a week of phone tag I find out today the this rheumatologist said they don't do lip biopsies anymore and refuse to see me for being seronegetive but the ent office I went to yesterday said I could get lip biopsy there so I'm waiting to hear back. The dry eye specialist said I had extremely dry eyes and neuropathy in my eyes. I think I also may have it in my legs and feet as I have to wear compression stocking as my legs and feet hurt. I do have a telehealth appointment with a rheumatologist from NYC I heard he was very good. So fingers crossed.
I too had a lot of unexpected "negatives" in my work up (Sed rate,CRP, ANA, HLAB27) but my new Rheumatologist found antibodies against my salivary glands and that plus my symptoms equalled Sjogren's to her. Good thing too, it also explains the weight bearing balance problem in my legs that I have had for over 2 years. Growing weakness, too. Short Fiber Neuropathy she called it and Sjogren's can do its own version of it. Also low IgG which may be part of the treatment. I will let you know. Don't stop your search. Nag, if necessary.
same with me my sed rate and c reactive protein was normal as was everything and i was tested for a bunch of things. my legs and feet hurt so much. i wear compression socks during the day which helps. but nighttime aches. hands and fingers all over really. normal cervical mri. I think my IgG was normal too. but neuropathy in my eyes. uuuggg. i do see a rheum by telehealth in oct. he was highly thought of so im hoping reason telehealth he is in nyc and i am in NH. im waiting to hear back from my ent about a lip biopsy which id rather not do but feel like i am running out of options.
This is an inspiration to me. Hugs and prayers for you. I have Sjorgens for 1 year now, I never heard of this illness before. Thanks to Mayo Clinic connect my main source of education. Doctors don’t explain the devastation of this disease.
I understand this sometimes turn to Lymphoma , so scary.
Any suggestion how to prevent this. What is best to take or do?
Sometimes Sjogrens doesn't show up in your SSA or SSB blood work. But you still have it if you have the symptoms. The best rheumatologist that I ever went too said he diagnosed it from the symptoms as the blood work was so erratic. I don't know how to prevent lymphoma or any of the other diseases that can be a result of Sjogrens. My advice is to keep your eyes moist- I use Systane ultra and drink lots of water. It has worked for me and my eye doc had told me to use it. I did find that if you get a flare- give in to it- rest as much as possible. Since I have started doing that, my flares are now hours- not days.
could you share if you dont mind who your rheumotologist is? thank you.
I go to Dr. Dayal in Ocoee, FL. Have a great day.
Thank you, jmb73 for the dry eye advice. My optomotrist suggested I use the moisturizing drops during the day, not just at night. All good advice. to Eileen, some of your symptoms sound very familiar. I would suggest you look at Low Dose Naltrexone research for Sjogren's. I'm using LDN for the all over pain and it works great. For me, no side effects. My neuropathy in my legs is very non classical (read: doctors' don't know what it is) and shows itself as loss of balance, making it hard to do anything on your feet, and weakness and melting away of leg muscles. My legs used to be the strongest part of my body. Not so anymore. Can you tell me about how the neuropathy in you eyes manifests itself?
I, too have been officially diagnosed with Sjögrens by a blood test orders by a rheumatologist. I have had this for many years and think it may have started when I was pregnant.
Does anyone else have a daytime sleep disorder as a part of Sjögrens? I was also diagnosed years ago with fibromyalgia, but now I’m thinking it is most likely a part of Sjögrens. So many weird symptoms – skin, brain fog, daytime sleep disorder(?), mouth, hands, feet, joints, eyes, hair loss, nausea, nose…etc.
I have now been falling. No idea how, but usually turning…like my balance leaves fit a moment.
Anyone else have that and think it’s related to Sjögrens?
Hi i was just officially diagnosed via a lip biopsy as my bloodwork was negetive. my rheumotologist also believes i have fibro. i am unable to sleep through the night. i even took a tylenol PM. didnt work. i would like to learn more about this disease.
@eileenb1022, I think learning as much as you can about your condition is one of the best things you can do to help yourself. I'm not sure if you have seen the Sjögrens Foundation website but they have a wealth of information that you might find helpful.
— Newly Diagnosed: https://sjogrens.org/living-with-sjogrens/newly-diagnosed
Have you discussed your problem sleeping through the night with your doctor or rheumatologist?
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