Undetermined Auto Immune

Dude that's a bummer. Sorry that's happening to you. It took me over 3 and 1/2 years to get my primary Sjogren's diagnosis and even then I did not get it from my rheumatologist, who to be honest was very proactive and was pretty sure I had ***something*"* And thus had proactively started me on hydroxychloroquine which is a first-line disease modifier for many autoimmune diseases.
Couple years later my retinal specialist was treating me for my wet AMD and saw changes in my retina and eyes that are only congruent with primary Sjogren's disease.
He proactively got on the phone with my rheumatologist and the next time I went in she officially gave me the primary Sjogren's diagnosis. Voila! Diagnosis!

My pain doctor prescribed LDN 3 years ago and that's helped a great deal as well.
I recommend LDNresearchtrust.org
for doing some reading of scientific studies and anecdotal patient and doctor and pharmacists experiences.

LDN is an off-label use of a drug for another purpose, naltrexone, an opioid receptor inhibitor used in treatment of addiction at much larger doses 50 to 100 mg whereas low dose naltrexone-LDN- is used as a novel anti-inflammatory , immune system modulator and overall pain relief without any addictive potential or any serious side effects.

My lupus and RA factors are usually borderline but I don't have the diagnosis cuz the blood work doesn't veer into the definitely positive territory. But I'm all right with that too because the treatment for primary sjogrens is basically identical to the treatment for RA and lupus.

I WISH YOU THE VERY BEST OF LUCK.
❤️

I have not read all the comments regarding your health, but what triggered me was the constant “chills”. Is it possible that you suffer from Hyperthyroidism? I ask, because your body is always cold with hyperthyroidism. It’s a simple blood test that will test your Thyroid Levels, T3-Free, T4-Free, Thyroid Antibodies. I suffer from Hypo-thyroidism, which is the opposite of Hyperthyroidism and take Synthroid to control it. Wishing you all the best on your health journey.

I have had high autoimmune markers for years. I have a strong family history of RA.(rheumatoid arthritis)
Complement C high, ANA high, Sed Rate high, CRP high but test negative for every thing.
I am being tested for CIDP since it is autoimmune. EMG/nerve conduction plus spinal tap. Spinal tap can check for other autoimmune disorders.

I'm in the very exact same situation as you and I'm also in Missouri would love to talk further

I'm interested please

Hi, what is your situation. I have had the dull burning ear pain accompanied with very severe chills for over 18 months. Both seem related because the severity has progressed over time for both of them.

I'm having neuropathy, but I also tested positive for FGFR3

I had my FGFR3 retested after my original post. It dropped from 7,500 to 3,300 just a little outside the normal value of less than 3,000. My experience seems to be neuropathy seems to be a catch all phrase when Neurologist can't figure out the real problem. Do you have any chill symptoms? What areas are impacted by your neuropathy? Compressed vertebrae can cause similar symptoms. On 11/20, I had surgery on C4-C7 for some extremely severe issues noted in an MRI. I now get to join a new discussion group for a paralyzed left vocal cord that the orthopedic surgeon picked up on a CT Scan prior to the surgery.

I had the lip biopsy for Sjogrens. The ENT doctor took four glands in between my teeth and lip. The inflammation was positive for Sjogrens. One problem I have. Yet to feel my lip again is been two months.

I heard there was a way to do an ultrasound to diagnose it, but I'm not sure. Did you take any medication for the sjrogens and do you have any neuropathy?