Possible Sjogrens Disease

@j77. Hi, again! I met you in another discussion about Sjogrens . I found the following discussion that may be of help to you. Some comments may be old but still helpful.
https://connect.mayoclinic.org/discussion/sjogrens/
Would you consider going to a major medical center or university medical center in your area. They are probabley the best places to get a diagnosis. Think you could do some research today?

Thankyou so much for your response!I have one specialist trying to get me into NIH,but she told me it can be really hard even with an unusual case like mine.I am going to two Neurologists and one of them is at University of Maryland.They are so stumped and have no idea what is going on because pretty much all my tests are coming back clear.One thinks possibly a metabolic muscular disease and the other is Checking kw for seronegative Myasthenia type diseases.I am really thinking autoimmune is involved.I am just trying to find anyone one else with similar symptoms.I may have to go to Mayo to find some answers.Thankyou so much for the link to the sjogren's discussion.

I have had similar symptoms as you, but years ago. And, I had the muscle weakness first, then years later the dry eye. I have an appointment with Rheumatologist at Duke this summer for a Sjogrens eval. My labs are negative, but I haven’t had lip biopsy.

Years ago, my rheumatologist thought my muscle (stiff and weak) issues looked like polymyalgia rheumatica, but I was too young.

Do you treat your dry eye? I see a cornea specialist, as I also have Salzmann’s nodules. I do daily intensive treatment of warm compresses, scrubs, drops, and nightly ointment. I have also received relief from acupuncture.

I hope you can find some answers. It can be very stressful and painful,

Thankyou so much for replying!I have had muscle weakness for years,but I always thought it had to do with already having Hashimito's.I will look into the polymyalgia Rhuematica.I take xiidra drops for my dry eyes now,but they are not helping. I might have to go to a new eye doctor amd start some of the treatments you are doing.I did take a Genetic test through my neurologist and something popped up that said variant of uncertain significance.It was for a couple Muscular Dystrophy type diseases including limb girdle muscular dystrophy.I am in my 40's.I just don't know.We don't have MD in the Family on either side,but maybe covid can bring something like that on.

The muscle issues were a mystery for me. I never got a diagnosis. My brother has similar symptoms now. He’s early 50s. Autoimmune runs in my family….RA, type 1 diabetes, Lupus, etc. it’s rampant.
For my muscles now (no longer weak and stiff like years ago) , I exercise daily and rely on PT, dry needling, therapeutic touch. And keep vitamin levels up. B12 and D3 with supplements, due to deficiency.

Ref. The dry eye. I can’t use the prescription drops. Wish i could. They irritate my eyes. There’s a new med in the form of nasal spray for dry eye. I haven’t tried it yet.

I’m so sorry you’re struggling. I too have had similar symptoms of inflammation on my body. I had a major surgery in April of 2022 and had 18” of my colon resected due to severe diverticulitis. In July of 2022 I began noticing deposits of fat on my upper arms where the jiggly fat is and my butt felt larger as I walked. I knew this was not normal, as I was practicing good eating habits before going on a family trip to Italy. It was noticed by my daughter in Italy who told me to go and see a doctor when we got home as she thought something was wrong with me. I saw my family doctor who I asked to have my Thyroid levels checked. To his and my surprise I was off the charts for both Hashimoto’s and Hypothyroidism. My numbers for Hashimoto’s was almost at 600 and they’re suppose to be 0! I began taking 100 mg of Synthroid and later my doctor added 5 mcg of Cytomel. I lost weight and was able to come off the Cytomel, as it was too much medication for me and I started leaning towards Hyperthyroidism. I’m stable now on my Synthroid. I’m wondering if you’ve had your blood levels checked recently. If you haven’t, you should and ask to have your TPO Antibodies checked again as the symptoms you’re having sound autoimmune to me. The dry eyes can be a sign of hyperthyroidism, Graves Disease or Sjogren’s Syndrome, all cause dry eye. Putting drops in your eyes won’t fix the problem if it’s autoimmune. I wish you luck on your health journey.

Thankyou so much for responding!I have had hypothyroid disease for a long time and have been on 50 mg of synthroid,but my TSH was slightly elevated with my most recent test so my doctor did raise it to 75 mg.I am going to wait to start it until after my cushings disease on Monday.It is just so much inflammation in the upper arms and legs.My behind also is huge and I just do t have any support in my pelvis,hips or shoulders.I am 5'10 and normally around 160 pounds which is a normal weight.I am in my late 40's now.When I first became ill I was barely over 100 pounds because I could not eat and now I am over 100 pounds from what I should be.I can barely walk,but I am not eating enough to make me gain all of the weight I have.I do think this was triggered by the iron infusion or covid.The upper arms feel like bees are stinging them.I was Healthy before all thos came on and I am pretty much disabled now and no Doctor knows what is wrong.It is so frustrating.

I just looked up Cytomel because I did not know what it was.So your doctor used that in addition to synthroid?My endricinologist is checking for Cushings disease because of the massive weight gain,but I just wonder if this is all related to just my thryoid.

Thankyou.It is definitely a mystery diagnosis.No one knows.We have tons of Lupus on both sides of the Family.It took them 20 years to diagnose my mom.She has severe headaches though,but I know Lupus can cause so many different symptoms.I am taking B12,B6 and D for deficiency.The prescription eye drops I got definitely hurt my eyes. I actually think the drops are making them dryer.Thankyou for suggesting the nasal spray.I will have to look into that.

Yeah, the prescription drop’s definitely hurt my eyes. I wish they didn’t. The cost of OTC drops and ointment is exorbitant. My best move was finding a gifted acupuncturist. He took me from despair and pain to a stable, almost normal status for several years. I still had to do the care routine daily, but I was comfortable. My ophthalmologist was shocked. She now tells her patients about my good experience. I never tried Lipoflow, since it’s expensive and not many people report it helps. I do intend to get plasma drops filled.