Rheumatologist in New Jersey knowledgable in Sjogrens

Would you be willing to go to NYC?

I’m going through testing myself. I’m an hour from Atlanta and I go to Emory. I think your best bet is heading into NYC. My son lived in Connecticut, suffers severe migraines and he had to make the trip often.
NYC has some of the best hospitals for autoimmune diseases. I think it’s never easy finding the best these days in medical because of the shortage.
I have a lot of symptoms but not a lot of tests elevated. Seems tough to diagnose. I’m having an ultrasound this week on my head and neck for salivary gland and thyroid and to look at other things.
Can I ask how they determined you had it. It took me 8 months just to see a rheumatologist at Emery in Atlanta but he did immediately order many labs and this ultrasound. It’s frustrating.
I do think you might need to go into the city. Can you take a bus or train so you don’t have to drive. Yes, it will be a pain. Wishing you all the best.

@sheritaylor I would if the doctor was really great.

@mothermary1 I had to practically have everything else ruled out first. I had a high ANA but my other blood work was negative. I am the “poster” child for Sjogrens clinically..I have debilitating dry mouth, fatigue, nausea, dry eyes, and tingling in toes and feet. I started with an oral pathologist since that was my most debilitating symptom. She thought that I had Sjogrens but advised AGAINST the lip biopsy saying there is a high false negative rate and it is not without complications. She told me to go to my internist for a complete work up which I did.

I am fortunate in that my primary also practices integrative medicine and knows a lot about autoimmune disease. The blood work for all came back negative.

I then decided to go to gastro for endoscopy since I had a horrible taste in my mouth —(from the lack of salivary enzymes but I did not know this at the time. Endoscopy was normal. He checked me for pernicious anemia and did blood titer for Celiac. All negative. Gastro thought I had Sjogrens.

Went to ENT to rule out salivary gland obstruction/infection. I practically had to beg for an ultrasound. The ultrasound, at the time, showed a nodule like lymph node in each parotid gland but the structure, size and everything else was normal. No cancer. No infection. This ENT was not knowledgable in Sjo and said he didn’t think it was that since my biomarkers were normal. He offered me a lip biopsy to which I said “no thank you”—especially after speaking to the Oral Pathologist from NYU.

I then went to sn Endocrinologist to rule out thyroid, parathyroid, and other metabolic diseases. All was normal. This was followed by a visit to the neurologist for a Brain MRI to rule out MS. I then went to a Head and Neck Surgeon who ordered a CT Scan with contrast (this was two years after the ultrasound). This time it showed that I had bilateral atrophy of the parotid glands. The pattern of the fibrous tissue was typical of what is seen in Sjogrens. I took this and all of my records to a Rheumatologist (my third) and she made the diagnosis.

Most Rheumatologists know very little about the disease. If you haven’t already done so, look at the website Smart Patients and Sjogrens Advocate. There is a lot of good info. I did a ton of research on this disease. John Hopkins has a lot of good information on the disease as well. The problem is that if you don’t have the biomarkers and don’t go for a biopsy or go for a biopsy which turns out negative, you may not get treated. This is why I got the CT Scan with contrast. It was my primary who coordinated the CT Scan with contrast with the Head and Neck Surgeon. The Head and Neck Surgeon said it is likely Sjogrens. The Rheumatologist did some extra testing and said she was diagnosing based on clinical presentation and CT Scan.

Good luck with everything. It’s an exhausting process.

Dr. Hal Mitnick is excellent. 212-213-9447. Not sure if he is taking new patients- but worth a try!!

@sheritaylor Thank you so much!!

https://www.healio.com/