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Would like to hear from people with Sjogrens
Autoimmune Diseases | Last Active: Nov 14, 2023 | Replies (76)Comment receiving replies
Thank you kindly.
My fear is that insurance/dr will insist I go on a long stint of prednisone before ever approving the biologic. That I don't want.
I wonder how to avoid that-
I feel this is so poorly understood and the tests seem to miss it - leading to more confusion as to the potential cause(s) and/or best treatment.
So here is another question of the group- for those of you with Small Fiber Neuropathy- how was that diagnosed? It seems there a host of rare causes (nondiabetic) causes of SFN- and I wonder if anyone has found a doctor to explore this in detail.
I wonder where to go- the local doctors at the ER neurologists admitted no one in the area had any expertise with this. Has anyone have any suggestions of who/where on the East Coast they find helpful?
Forgive me these many questions- I'm trying to figure this out.
Replies to "Thank you kindly. My fear is that insurance/dr will insist I go on a long stint..."
@buttons5104 You can find more experienced doctors at comprehensive medical centers or at university hospitals. Do you have 1 in your state. Ask you primary care doctor if they will give you a referral to a doctor at the large medical centers. They can also send all of your medical records ahead.
ER neurologists usually don’t know all this information because they are experts in major accidents.
Will you look up the medical center or university hospital in your area and get some information on seeing a doctor?
I went to a neurologist. They would only see me for neuropathy not sjogrens he sent me for blood tests and vein tests he said many times they show normal he told me no matter what tests showed I do have small fiber neuropathy all over he told us to get this book. Small Nerves, Bug Problems by Todd Levine MD get the book amazing read. Now I am on my way in next few weeks to a new Rhematogist until I can get a new one at Mayo Clinic.
Long term prednisone is not an ideal option and I don't think a reputable rheumatologist would force you to do that. My insurance initially wanted me to do a trial of azothioprine, which I was willing to do, but thankfully my rheumatologist talked them into rituximab as my systemic symptoms were quite disabling. It can be a fight with insurance but don't give up. You yourself can appeal their decisions, and your doctor can as well.
I've heard that the Sjogren's center at Johns Hopkins in Baltimore is good.
Another option is seeing Dr. Chadwick Johr at UPenn in Philly.
Dr. Julius Birnbaum used to be at Hopkins but moved to Pittsburgh; he is known for his expertise in neurologic complications of Sjogrens.
My small fiber neuropathy was diagnosed by my neurologist. I had an EMG done at her office, and it showed bilateral large fiber neuropathy. Since that was positive, she said that meant small fibers were also involved. If the test was negative, she would have sent me to have a skin biopsy. That specimen would've been sent for evaluation at Mayo.
There are MANY great pages of information on Sjogren's Advocate website, including neuropathy details. I think you'll find it very helpful.
Best wishes!
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Hi. I haven’t been diagnosed with Sjogren’s yet, but have many signs/symptoms of it. I have small fiber neuropathy. I had a QSART test performed by a neurologist in Pittsburgh. It measures how much you sweat. Electrodes are placed on an arm and leg to measure sweat. It’s virtually painless. Initially I tried to have a nerve biopsy, but couldn’t find anyone to do it, not a neurologist or dermatologist. I see Dr G. Small, neurologist at Allegheny Health network. Hope this helps.