New to SjS

[MrsHall514]

I was recently told that my rheumatologist ?suspects I may have Sj?gren?s syndrome? based on blood tests. In 2005, I was Dx?d with fibromyalgia and told I have a slight positive ANA <1 but >0, and that it will turn into Lupus or RA; not a matter of if but when. In Feb my labs were normal for me, high CRP and ESR, and ANA still less that 1. In July I began having weakness/fatigue in my arms and legs. In August, my ANA was full blown positive so he did more tests that pointed to SjS. I have felt at times that my eyes were kinda dry, but just figured it was from wearing contacts. I have no trouble producing tears or saliva, but in the past couple months, the roof of my mouth has started to feel dry and scaley. Is it common to not have the primary symptoms at diagnosis and just the blood tests? I am currently breastfeeding and other women have commented on the good amount of milk I?m able to produce when I was pumping at work. I have an appointment with another Rheumatologist to confirm the Dx, but not until January. Just trying to get some more info and understanding of this condition.

[Joe S.]

Welcome to the forum.Get your tests. Have them check your vitamin D levels also.

I was dx'd with Fibromyalgia first then after dealing with that for years my symptoms changed. I thought I had Lupus because of the facial rash that I had. The first Rheumy sent me to a neuro who wanted to check me for Sjogren's nerve involvement. Over 7 years later I was Dx'd with Sjogrens by symptoms not blood work.

Sip, swish, then swallow your water.

you can see what some of us are taking by looking at our signatures. Research everything thoroughly before you try anything even from a doctor. know the side effects, counter indications, and interactions. Bring an advocate to every doctor appoint.It helps to remember later what the doctor said.   

I can speak later about more management techniques. You may have to remind me with a PM.

[MrsHall514]

Thanks! So far, I am not on any meds for this. Just told to take Tylenol for the joint pain. I recently saw a neurologist who Dx?d me with Joint Hypermobility Syndrome as well. He did more blood work, including Vitamin D. He?s also checking on Hashimoto?s Disease. He wants to do MRIs, X-rays, EMGs, sleep study, etc.; but none of that is for SJS. The rheumatologist who said I may have SJS hasn?t told
me anything treatment wise, except for symptoms I don?t have. So...just not sure what to do at this point.