Have been followed x 3yrs. by Neurology for memory loss, brain fog, and for the last year, neuropathy and loss of balance. Afer multiple tests and extensive blood work, I came back with positive SSA titers x2, and she thought it is Sjogren's. She sent me to Rheumatology, and lip biopsies were negative, so she said no Sjogren's. In the last several months, having bouts of overwhelming fatigue, joint and muscle pain,increasing dryness in my mouth, eyes, skin, and excruciating vaginal dryness. Repeat SSA was now doubled over previous results, so was sent back to same Rheum. She said still no Sjogren's, but started me on Salagen for dryness, which was helping, but I had severe nausea and vomiting with it, so have gone back to over the counter treatments for dryness. Have been on Meloxicam for joint pain for years, and now am using NSAID Diclofenac gel topically over the painful joints, which has helped. Am also using Extra Strength Tylenol when muscular pain kicks in, but it only helps minimally. My Rheumatologist's nurse mentioned to me that in the same day that she told me she doesn't think it's Sjogren's, she also told another patient the same thing, and stopped her meds! This lady had been diagnosed yrs. ago by a Rheum. that was out of state with another health plan, and had been doing well on that plan of care! My Primary Care recently asked me what symptoms I was having that caused me to be sent to Neurology and Rheumatology. When I gave her the list of new symptoms (also excessive hair loss and difficulty swallowing), she told me that I was boing a "whiner", and that the symptoms were probably from aging, and menopause (that I went thru over 20 yrs. ago!) As an RN vor over 44 yrs. I found this to be insulting, and now have a new PCP! So..... according to the Sjogren's Foundation, it is possible to have SS with negative lip biopsies, but a positive SSA. Will be changing Rheum. when I move out of CA to TX later this yr., and only hope I don't have an other organ system problems before then!
Happy Mother's Day to all of the wonderful mom's out there to both 2 leggeds and 4 leggeds.... Big squishy hugs....xo
Muji retired Friday after 40 years of teaching. Muji has been so supportive as a CL here on DS, let's show Muji our support. Let's give Muji a retirement party! Post your retirement wishes to Muji as he transitions to retired life in Mexico. Let us know what food you are bringing to the party and any gifts you might have for Muji. Cheers Muji to your new adventure!