Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
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!
-
I'nm exhausted. This doxycycline thing has ripped me apart and I'm eating crackers and water. I can't take (anything) or eat (anything) except saltines and toast and maybe unbuttered watery mashed potatoes. Are we sure the cure isn't worse than the possible disease?!?!And a week to go. ***Fun cures that WERE worse than the disease:ARsenic. Popular against STDs, which just compounded misery...
-
Unfortunately, doctors don't really know what's going on with us, other than a lot of us have similar symptoms and about half of us have neuropathy, thyroid disease, and organ involvement. I'm glad you are going to change Rheumy's, I do think some are much better than others and actually try and they care about our pain. My doctor is pretty good and he believes it's autoimmune related so he just labels it as Lupus and lets me try different medications based off that diagnosis. I don't take anything right now, but I plan on taking an immunosuppressant once I get back in. I may need my colon removed so I'm waiting on this before starting anything.
I'm sorry you had some terrible experiences with doctors. I think it's so sad that so many people have to go through the ringer with these doctors. as if we enjoy being in severe pain and losing our ability to function like a normal human being. I hope when you move you have a lot more luck with doctors.
So far throwing the whole book at my symptoms has helped make life a little easier to manage.
I had my punctums (tear ducts) cauterized in both eyes, take oral med to produce tears and saliva called cevimeline, use eye drops called Restasis, and night time lubricating ointment. I use a soft toothbrush when brushing and Biotene products only. I also carry cough drops on me in case my mouth gets dry when I'm out and about and that choking feeling comes on again. Plus always carry water around so I don't get anything stuck in my throat (which happens often).
Like you I use extra strength Tylenol for body aches, headache, etc. It barely helps, but it's better than noting since doctors won't prescribe pain killers anymore. I'm glad you got a new PCP and are changing your rheumy.
I am new and I too have most of the same symptoms and more. I saw a rheumatologist who said something is going on with my body. Yet my SSA levels are not bad. But inflammatory a bit high. She was able to find my history in her system and said she is wondering if my body was leading to an autioumme disease but there is so many out there. She wanted to do a early or pre stage blood test for sjogen but because of the covid and Insurance I didn't and have to start over. However my Neurologist said the same thing a year before I saw a rheumatologist and he did blood test for sjogen.and it was normal. I read that blood test can be normal and you have it. My rhemologist had said my eye door can do test but I can't see my eye doctor because of covid. Lastly in May this year my joint has been bordering me which is new for me.