Billylyne5
I am glad you got ref feral to rheumatologist. I hope you will get help with diagnosing .
I do not want to " steal" you thread, but my comments and questions are in relations to your topic.

en bloc,
I am interested in your input with recommendations of Dr. Birnbaum at Hopkins.
I wonder if I should pursue getting a ref feral up there.
You said this doctor specializes in pt with neuro manifestation of rheumatic diseases? Well, this is just what my local rheumatologist diagnosed me with. After almost 2 years of neuro symptoms, my dx was, rheumatoid arthritis with presenting symptoms as sensory neuropathy and Small Fiber Neuropathy.

I have been tested for Sjoegren 2 - 3 times. Negative SSA and SSB 3 times, negative lip biopsy 2 years ago.
Negative skin bx for SFN, but this is about to be repeated. Had QSART at Mayo, positive for SFN by sweat test, and in addition the severe symptoms.
Sero negative inflammatory arthritis for a while. Was considered for Rituxan treatment, had the VectraDA test for rheumatoid arthritis which came back positive in the mild section, so for now being treated with Leflunomide.

I have now lately had such a flare up, I had to seek up help from my rheumy who gave me a weeks treatment with Steroid.
I had joint pains, and ridiculous, increased Burning pain. I have had such dry eyes the last few weeks, I can not open my eyes in am, I have artificial tears on the night table, to use. I have also had this tightness in chest for over 2 years now. It feels like a tight squeeze that sometimes last for hours, and it often comes at the times when my neuropathy symptoms flares up, I have had all kinds of check ups, as CT ( only a couple of stable nodules in chest) PFT showed mild small airway obstruction. ( but this can be due to many things) Cardiologist has put me on small dose of Norvasc, which should help. I do have some cardiac issues, and I will hopefully have a repeat cardiac Ecco next apt in March. But they really have not come up with the reason of my chest tightness.

Is it possible that it can be due to Sjoegrens?

I am now wondering: with the increased/flareup of veuropathy burning symptoms, with the increased dryness of eyes, the joint pain and the chest tightness, should it be time to reassess and test for Sjoegren's again???

I have a apt. with my ophthalmologist at the end of this month, I wonder if I should ask for a Schirmer test?

Cyclelops,
I have never had a MRN. (I have had many MRI of brain and spine due to numerous problems, both spinal, but mostly cerebral aneurysm) But they have never done MRN to possibly study the cause of my neuropathy. I did go to Mayo. That is almost 2 years ago. They did tilt table, was negative then. They also included the sweat test which was positive. I had Gastric Emptying study which was positive for gastroperesis. Otherwise Mayo did not help me much.

I wonder how I should get the MRN done. I wonder if I should have my rheumatologist refer to this Dr. Birnbaum at Hopkins that en bloc recommended, and perhaps this could be done?

Thanks for reading